INNOVATIONS IN WAYFINDING USING CUPBOARD DOOR DESIGN TEMPLATES FOR DEMENTIA

BY

JOCELYN HUNT

A Thesis Submitted to the Program in Gerontology in Partial Fulfillment of the Requirements for the Degree Bachelor of Art Honours Gerontology and Health Studies

McMaster University April, 2012

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HONOURS BACHELOR OF ARTS (2012) COMBINED HONOURS IN GERONTOLOGY AND HEALTH STUDIES DEPARTMENT OF HEALTH, AGING AND SOCIETY McMASTER UNIVERSITY Hamilton, Ontario TITLE: Innovations in Wayfinding Using Cupboard Door Design Templates for Dementia AUTHOR: Jocelyn Hunt SUPERVISOR: Gail Elliot NUMBER OF PAGES: 85

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A Note from the Author

Since completing this thesis in April 2012, I am delighted to announce that the preliminary findings from this thesis has led to the development and creation of a pilot project titled the “New Horizons Wayfinding Program” with the Alzheimer Society of Hamilton and Halton. This project was generously funded by the Government of Canada’s New Horizon’s for Seniors grant.

Over the past year and with the collaboration of co-researchers Barb McCoy and Marian Cummins, we have been able to further implement and test the efficacy of this signage on a larger sample size. The preliminary research by Hunt & Elliot has been presented at conferences both provincially and nationally, and we are excited to release the final findings of the pilot project at the Ontario Community Support Association’s annual conference on October 24th 2013 in Markham, ON. This research will be submitted for publication in 2013/2014.

I would like to thank the individuals living with dementia, their care partners, and volunteers for their time and dedication to this pilot project. As well, I would like to thank Alisha Gardener, the many Alzheimer Society staff, and community partners for their valuable support with this project. We could not have done it without you.

Jocelyn Hunt August 27th 2013

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Abstract: The unique needs and support for people living with dementia-related illness will require creative, cost-effective solutions in environmental home design that also support changes in memory. A review of current literature shows heavy concentration on environmental design in institutionalized settings. There is a prominent gap in wayfinding solutions and environmental design which focuses on research within individual homes and the community. With the increase of an aging population and the prevalence of Alzheimer’s disease and related dementias in Canada, research that supports innovative approaches to independent living and care for people with dementia is greatly needed. Building on existing literature, this study will focus on discovering whether environmental cues such as directional arrows that point to rooms (eg. “this way to living room”) and templates that look like glass covered cupboard doors aimed at helping a person with dementia will help find things in cupboards and their way around the home. Method This research consists of a one-way dyad study, where two populations were studied: the family member/informal caregiver (FM/IC) and indirectly, the family member with dementia though observations made by the FM/IC. A series of quantitative research questions, in the form of pre-study and post-study questionnaires we conducted, as well as observation journals which recorded observations made by the FM/IC of the responses their family member with dementia experienced with the cupboard door templates and directional arrows that were implemented into their home. Results The results showed that the use of cupboard door design templates and environmental cues assisted in increased wayfinding, decreased responsive behaviours, promoted higher levels of independence for those living with dementia and helped to lessen the burden of dementia for family/informal caregivers.

Keywords: wayfinding; dementia; responsive behaviours; independence; caregivers; templates and signage; environmental cueing; design

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Acknowledgments: Funding for this study was generously supported by the Alzheimer Society of Hamilton, Halton, Haldimand Norfolk and Brant. Sincerest expression of thanks for her guidance, support, and knowledge for this study is extended for Gail Elliot, supervisor of this thesis. Gail, you have been a great inspiration and thank you for sharing this opportunity with me. Grateful acknowledgement and thanks is reserved for Deb Bryson, Psychogeriatric Resource Consultant at the Alzheimer Society of Hamilton, for her support, generous feedback and expertise on design for dementia. As well, warm thanks are extended to the families that participated in this study, who volunteered their precious time, welcomed me into their homes and allowed me to work with them on this study. Thank you.

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TABLE OF CONTENTS

Page

1.0 Introduction 8

2.0 Literature Review 9

2.1 Defining and Understanding Wayfinding 9

2.2 The Aging Mind and Body 10

2.3 Behaviour in Dementia 12

2.4 Environment and Design 13

2.5 Wayfinding Strategies and the Supportive Environment 16

3.0 Methodology 20

3.1 Research Overview and Methodology 20

3.2 Hypothesis and Research Objectives 21

3.3 Data Analysis 21

3.4 Ethical Considerations 22

3.5 Limitations and Recommendations for Future Research 22

4.0 Results 22

4.1 Pre-Study Questionnaire 22

4.2 Description of Templates, Directional Arrows,

and Signage Used in the Study 26

4.3 Observation Journal 28

4.4 Post-Study Questionnaire 31

4.5 Participant Feedback 36

5.0 Discussion 38

5.1 Effective Wayfinding Strategies 38

5.2 Responsive Behaviours, Independence and Self-Esteem 39

5.3 Important Design Features of Environmental Cueing 40

5.4 Challenges 42

5.4A Participant Withdrawal 42

5.4B The Use of Artwork Versus Photographs 43

6.0 Conclusion 44

7.0 References 46

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Page

8.0 Appendices 49

Appendix 8.1: Pre-Study Questionnaire Results 49

Appendix 8.2A: Observation Journal Results -Results

from Case Study #1 51

Appendix 8.2B: Observation Journal Results –Results

from Case Study #2 53

Appendix 8.3: Post-Study Questionnaire Results 57

Appendix 8.4: Quotations from Study Participants 61

Appendix 8.5: Tables and Graphs 65

Appendix 8.6: Examples of Products Used in This Study 71

Appendix 8.7: Examples of Questionnaires, Observation

Journal and Other Materials Used For This Study 74

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LIST OF TABLES

Page

Table 2.2A: Age-Related Sensory Changes and Outcomes 11

Table 2.3A: Behavioural and Psychological Symptoms of Dementia and Causes 12 Table 2.4 A: Design Elements and Purpose in Supportive Living Environments for People with Dementia 15 Table 2.5A Case Example: The Importance of Wayfinding and Environmental Cueing 17 Table 4.1A: Case Study #1 23 Table 4.1B: Case Study #2 23 Table 4.1C: Pre- Study Questionnaire Results Questions #4 - #6B 25 Table 4.1D: Pre-Study Questionaire Results Questions #9 and #10 25 Table 4.4A: Average Number of Hours Spent by Caregiver Assisting Family Member with Dementia 32 Table 4.4B: Level of Difficulty Experience By Family Member with Dementiain Locating Items and Wayfinding Before and After the Use of Templates 33 Table 4.4C: Presence of Responsive Behaviours in Family Member with Dementia Before and After Templates 34 Table 4.4D: Level of Independence of Family Member with Dementia Before and After Templates 35

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1.0 Introduction

In 2010, the prevalence of dementia affected more than 500,000 Canadians, with

over 110,000 new cases a year (Alzheimer Society of Canada, 2011). This is equivalent

to one new case every five minutes, which will leap to over 250,000 new cases or one

new case every two minutes by 2050 (Alzheimer Society of Canada, 2011). The

economic impact of dementia in Canada will climb from the current 22 billion dollars to

over 153 billion dollars within a generation (Alzheimer Society of Canada, 2011). On a

global perspective, more that 35.6 million people live with dementia (Alzheimer Society

of Canada, 2011). This is more than the total population of Canada (Statistics Canada,

2011).

With the growing aging population both nationally and internationally, there is a

demand for innovative and practical interventions that support and address the needs of

people with dementia, their families and caregivers. Aging in place, meaning supporting

older individuals to remain in their own homes, is often a desired outcome reflected in

the current aging population (Charness and Holley, 2001). This will only increase with

time. The unique needs and support for people living with dementia-related illness will

require creative, cost-effective solutions in environmental home design that also support

changes in memory.

A review of current literature shows heavy concentration on environmental

design in institutionalized settings. There is a prominent gap in wayfinding solutions and

environmental design which focuses on research within individual homes and the

community. This research aims to contribute to this existing void in knowledge of

dementia related to designing supportive home environments. Through the application

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of wayfinding strategies within the homes of people with dementia and an analysis of

how these strategies effect behaviour and support memory, findings of this study will

add to a much needed body of literature on environmental design for dementia.

2.0 Literature Review

2.1 Defining and Understanding Wayfinding

There are many ways to define wayfinding. For example, wayfinding can be

defined as an essential skill used in everyday life, the ability to recall the environment by

making executive decisions about navigation, and the overall process of reaching a

destination (Sharlin et al., 2008).

Associated with the hippocampus area of the brain, known for its role in spatial

memory and navigation, wayfinding works through the use of cognitive maps, mental

representations, and landmarks of the person’s environment (Head and Isom, 2010;

Sharlin et al., 2008). This basic cognitive mapping ability can be compromised by

disease, injury and/or age, where wayfinding problems often serve as an indicator of the

onset of Alzheimer’s disease and other related dementias (Sharlin et al., 2008;

Lemoncello et al., 2010).

As part of normal aging, research shows that the ability to recall landmarks,

recognize, and comprehend environmental scenes naturally deteriorates, as spatial

navigation abilities begin to weaken (Head and Isom, 2010). In a study comparing

wayfinding and route learning skills, older participants experienced increased difficulty

recalling landmarks and locating objects than their younger counterparts (Head and

Isom, 2010). The research further suggests that the absence of visual aids was a

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significant contributing factor to the negative navigational outcomes of the older control

group (Head and Isom, 2010).

The deficits in wayfinding ability are further amplified with the presence of

dementia. Components of neural activity regarding navigation and wayfinding ability is

compromised in early onset of Alzheimer’s Disease and can be seen in responsive

behaviours such as getting lost and wandering (Head and Isom, 2010).

2.2 The Aging Mind and Body

To further understanding and appreciate of the lived experience of people with

dementia, an understanding of age-related changes in the mind, body, and the

development of dementia is crucial. As previously explained, the ability to generate,

maintain and use cognitive maps deteriorates with age and is further amplified with the

onset of dementia (Head and Isom, 2010; Marquardt and Schmeig, 2009).

According to Cognitive Theory, people with dementia exercise difficulties with

multi-step tasks due to the deficit in executive functioning, planning, sequencing and

attention control (Wherton and Monk, 2010). Through the use of assessment tools, such

as the Mini Mental State Examination (MMSE), health care providers can assess the

stage of dementia (mild, moderate, severe) and level of functional ability (Wherton and

Monk, 2010). With the onset and progression of dementia, the ability to complete

activities of daily living (ADLs), such as toileting, dressing, and eating, are often

compromised (Wherton and Monk, 2010). This decrease in ability affects the quality of

life for people living with dementia. This may include, but is not limited to: increased

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need for personal assistance; increased anxiety; poor self-esteem; increased isolation;

and possible relocation to institutionalized care (Wherton and Monk, 2010).

In addition to deficits presented by an aging mind and the development of

dementia, changes in sensory perception are also common and affect how a person’s

environment is understood and experienced. The chart below outlines age-related

changes in the sensory experience and the potential outcomes. These are not specific

to dementia-related illnesses, but help to illustrate the possible co-morbidity of changes

an older adult may experience.

Table 2.2A: Age-Related Sensory Changes and Outcomes

Age-Related Sensory Changes Outcomes

Vision 1. 1. Decline in light accommodation

response 2. 2. Diminished pupilary size 3. 3. Yellowing of the lens 4. 4. Atrophy of the ciliary muscles 5. (holding the lens) 6. 5. Development of cataracts

1. 1. Lessened acuity 2. 2. Decline in depth perception 3. 3. Diminished colour perception 4. 4. Increased sensitivity to glare 5. 6. 5. Decreased visual clarity

Hearing 1. 1. (i) Thinner, drier skin of external ear

(ii) thicker and longer hair in external ear canal (iii)narrowing of auditory opening (iv)increased cerumen

2. 2. (i) Ossilar calcification (ii)decreased blood cells to inner ear and auditory nerves

3. 3. Muscle, arterial blood vessels and spiral

ganglion degeneration

1.May result in difficulty hearing high-frequency sounds 2.May lead to gradual loss of sound 3.Degeneration may impair hearing ability

Smell and Taste

1. 1. Decreased olfactory cells

2. 2. Decrease in size and number of taste buds

1. 1.(i)Decreased appetite

(ii)decreased protection from harmful odours and unsafe food

2. 2. Could contribute to poor nutrition

(Adapted from van Hoof et al., 2010)

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It is important to understand these age-related changes in the mind and the body

in order to fully understand how people with dementia perceive the world around them.

By doing so, a greater knowledge of behaviours can be understood and explain why

“problematic” behaviour occurs. This knowledge will further aid in the development of

innovative design strategies that enable a person with dementia to be more

independent and supported within their own environment, despite experienced deficits

in cognition.

2.3 Behaviour in Dementia

In the 1970s and early 1980s, certain behaviours such as wandering, aggression

and depression were considered to be an unavoidable consequence of dementia.

Unfortunately, fragments of this belief still exist today (Aberdeen et al., 2010). It is

important to understand and recognize the complex behavioural and psychological

symptoms of dementia (BPSD). More importantly, it is paramount to deepen an

understanding of why these symptoms occur and to consider the contributing factors

that lead to “problematic” or responsive behaviour.

The chart below is a list of common behavioural and psychological symptoms

and some contributing factors to the cause of BPSD. This list is not exhaustive, yet aims

to illustrate common behaviour experiences in people living with dementia and why they

occur.

Table 2.3A: Behavioural and Psychological Symptoms of Dementia and Causes

Behavioural Symptoms Psychological Symptoms

Causes of BPSD

Wandering

Restlessness

Hyperactivity

Irritability

Anxiety

Depression

Psychological

co-morbidities

Unmet need or situation

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Agitation

Aggression (verbal

and physical)

Appetite and eating

disorders

Socially

unacceptable

behaviour

Disturbed sleeping

and waking cycle

Emotional lability

Apathy

Delusions and

misidentification

problems

(paranoia,

suspicion,

abandonment,

betrayal)

Hallucinations

(visual, olfactory,

touch, auditory)

Over and under-stimulation

Presence of pain

Overwhelming stressors or

event(s) made

unmanageable by cognitive

deficit

Lack of meaningful activity

Unsupportive environment

Social and cultural

differences between

individuals

(Adapted from Aberdeen et al., 2010; Elliot, 2010)

It is important to recognize that variation in experiences of BPSD do occur on an

individual basis. Furthermore, the symptoms illustrated here do not account for all types

of cognitive impairments and/or dementia-related illnesses and should be interpreted as

such.

Research shows that although behaviours may be related to the progression of

dementia, they are not necessarily caused by the illness itself (Aberdeen et al., 2010). If

causes of BPSD are not addressed or dealt with properly, a snowballing effect of

behaviour can occur (Aberdeen et al., 2010). Although signs and symptoms of dementia

are progressive and irreversible in nature, BPSDs are often treatable and/or reversible

with the use of an appropriate care approach (Aberdeen et al., 2010; Elliot, 2010)

2.4 Environment and Design

In western society, the majority of people living with dementia live, and wish to

continuing living, within the community (van Hoof et al., 2010). Of industrialized

countries, statistics show that 73 percent of people with early-to-moderate dementia are

living within their own homes (van Hoof et al., 2010). Due to this desire to age at home,

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also known as “aging in place”, innovative strategies to promote independence, improve

accessibility, maintain autonomy, and maximize financial resources are paramount in

achieving and maintaining this goal (Brawley, 2001). Institutionalization will often occur

through a decline in health status of either the person with dementia or their partners as

the burden of care increases (van Hoof et al., 2010). People with dementia experience

an altered sensitivity to environmental conditions, which can lead to problematic

behaviour if needs are not properly addressed. This further adds to the stress and

burden of care on family members, consequently leading to institutionalization (van

Hoof et al., 2010).

The well-being and behaviour of people with dementia is strongly influenced by

the design of the environment (Marquardt and Schmeig, 2009).This is why the

environment plays such a significant role in the lives of people with dementia. If an

environment is supportive in nature, research shows that this can enable a person with

dementia to help them achieve their full potential as an active participant in their daily

lives (Davis et al., 2009). In contrast, a non-supportive environment and poor design

elements can affect a person with dementia’s functional ability, health and well-being

(Davis et al., 2009). For successful environmental design, emphasis should be placed

on knowing the user and their goals (Charness and Holley, 2001). With deficits in

sensory perception and cognitive ability as previously explored, the importance of

dementia-friendly environmental design is crucial in supporting the specific needs and

challenges presented in the lives of those living with dementia (Davis et al., 2009;

Marquardt and Schmeig, 2009).

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Research shows that sensitivities to indoor environmental conditions such as

lighting, physical layout, air quality and the acoustic environment, can help induce

problematic or responsive behaviours in people with dementia (van Hoof et al., 2010).

Thoughtfully planned environments that address these sensitivities have proven to

reduce responsive behaviours such as agitation, incontinence, aggression, wandering,

confusion and disorientation (van Hoof et al., 2010; Brawley, 2001).

Design elements need to incorporate stimulation and support of all aspects of

sensory experience, addressing mobility, hearing, vision, and olfactory impairments due

to aging and/or the progression of dementia (Brawley, 2001). Furthermore, elements of

design in the home setting need to address not only the specific needs of a person with

dementia, but also the needs of the family and/or informal caregiver (van Hoof et al.,

2010).

In order to create a supportive environment for people with dementia, certain

design principles or goals are incorporated into the lived environment (van Hoof et al.,

2010). The chart below is a compilation of research on environmental design and

specific design features that are critical in creating a supportive, dementia-friendly living

environment.

Table 2.4 A: Design Elements and Purpose in Supportive Living Environments for People with Dementia

Design Element Purpose

Structured, simple, and stable environment

Familiar and home-like

Support functional ability through meaningful activity

Promote dignity and independent functioning

Serve as a cue to memory

Reduce agitation, confusion or other responsive behaviours

Maintain competence and self-esteem

Promote social interaction

Support wayfinding and orientation

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Use of familiar furnishings (such as artwork, furniture, memorabilia, pictures)

Use of warm, soft colours

Floor finishes and use of lighting

Defining spaces through use of colour and spatial contrast

Barrier-free, compensating environment; safety and security

Encourage eating, create home-like atmosphere

Non-glare finishes on floors and non-intrusive lighting will support vision sensitivities; decrease likelihood of falls

Support space orientation and purpose

Promote and preserve autonomy

(Adapted from van Hoof et al., 2010; Marquadt and Schmeig, 2009; Cioffi et al., 2007; Pynoos et al., 1989; Giltin et al., 2002; Davis et al., 2009)

Although there are many design elements to consider, this chart explores a

sample of features that help to support a person with dementia. Meeting the needs of

persons with dementia by incorporating design elements such as use of colour,

contrast, lighting, flooring, spatial layout, signage and environmental cueing into

implementation of wayfinding innovations and solutions (Marquardt et al., 2011).

Design features that recognize and eliminate barriers; accommodate for age and

dementia-related deficits; as well as enable choice, preserve autonomy and assign

meaning, will help in supporting people with dementia and improve their quality of life

(Brawley, 2001; Marquardt et al., 2011).

2.5 Wayfinding Strategies and the Supportive Environment

From the research explored in previous sections, we can see the impact that

environmental and appropriate design can aid in supporting people with dementia.

Below, a case example outlines common experiences people with dementia and their

families encounter when trying to locate objects or places within the home.

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Table 2.5A Case Example: The Importance of Wayfinding and Environmental Cueing

Eva, a 64-year old woman, cares for her husband Ron, aged 65, who is diagnosed with probable Alzheimer’s Disease.

"He walks around for six times, before he finds the switch. I mean, I don't let him become tired from such things.[…] If I'd say, 'Please turn off the lights', then he has turned to four to five plug sockets, before he reaches the right light switch. Then I need to direct him:' There, forward, to the right'.[…] I want to let him do it by himself, but I really need to give him directions."

(adapted from J. van Hoof et.al 2010)

With the onset of dementia, episodic and semantic memory is most severely

affected (Provencher et al., 2009). This makes it difficult to remember personally

experienced events stored in the short-term memory, remembering mistakes or errors,

as well as retrieval of information - making wandering or “lost” behaviour, as well as

object misidentification, a more common experience (Charness and Holley, 2001;

Provencher et al., 2008). This could explain why Ron was unable to locate and identify

the light switch to turn off the lights. However, through the progression of dementia

learning abilities such as procedural memory, memory that support activities, is spared

(Charness and Holley, 2001; Provencher et al., 2009; Elliot, 2010). This appears to be

promising for learning new information through error-free tasks related to daily living

(Provencher et al., 2009). In the early-onset of dementia, approaches which exercise

the procedural memory and build on current capabilities could prove to be most

effective in training someone with dementia to work with tools in their supportive

environment (Charness and Holley, 2001). This is important when designing and

implementing environmental strategies for people with dementia which promote

independence and support memory deficits.

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As dementia progresses, disorientation in familiar locations often occurs for

people with dementia (Marquardt and Schmeig, 2009). The use of wayfinding

strategies, such as environmental cueing and signage, can further aid in orientation

(Marquardt and Schmeig, 2009). Meaning, if a sign labelled “ligh switch” was placed

beside the light switch, Ron may have been able to turn the lights off on his own without

the help of his wife. Research shows that environmental support has proven to minimize

memory failures through the use of environmental cueing (Charness and Holley, 2001).

Placing memory prostheses, such as signs with pictures accompanied by text within the

environment, allows for the brain to bypass faulty semantic retrieval of information

(Charness and Holley, 2001; Fleming et al., 2003). Environmental cueing and support

can be characterized as the process of over-learned habits which becomes automatic,

requiring less processing by the brain. By replacing internal cueing, which is affected by

dementia, with external memory cues, such as placing information in the environment at

the time of information retrieval, can reactivate internal cues (Charness and Holley,

2001; Elliot, 2010). With an increased supportive environment through wayfinding

strategies, functional ability is enhanced (Marquardt et al., 2011).

Furthermore, environmental strategies can help decrease difficult behaviours

(Kincaid and Peacock, 2003). In a study on the use of wall murals, findings suggested

murals proved to be an effective intervention for exit-seeking behaviour by engaging

residents with dementia by disguising doors as bookshelves, redirecting residents to

more positive interactions (Kincaid and Peacock, 2003).

In a study by Wherton and Monk on kitchen-related tasks, participants with

dementia reported to have difficulty locating and identifying objects commonly used in

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the kitchen (Wherton and Monk, 2010). When object identification was not problematic,

participants also experienced difficulties locating items concealed in cupboards and

drawers, resulting in having to heavily rely on their spouse or caregiver to carry-out

many kitchen related tasks (Wherton and Monk, 2010). This occurs because a blurring

of semantic categories is experienced, making it difficult to identify and/or locate objects

(Wherton and Monk, 2010). Some solutions to support these memory deficits include

ensuring that the use of wayfinding and environmental cueing is simple and can

successfully trigger well-learned behaviours that are supported in the procedural

memory (Fleming et al., 2003). Use of pictorial signage accompanied by text will further

aid people with dementia in finding things around their home, as well as within

concealed cupboards and drawers, when placed on the outside to identify its contents

(Fleming et al., 2003). Idealistically, cupboard doors and compartments would enable

people with dementia to better identify and locate its contents; where better design

could remove the need for signage all together (Fleming et al., 2003). However, this

concept is not the most cost-effective and affordable solution.

As the global population continues to rapidly age, the demand for innovative and

practical interventions that support the unique needs of people with dementia and their

families is great. With trends showing a shift from institutionalized care to aging in place

opportunities, environmental home support innovations must be creative, practical and

affordable. Wayfinding strategies and supportive environmental solutions need to

incorporate smart and appropriate elements of design. By doing so, we are one step

closer in helping people with dementia live with the disease and lead more independent

lives that promote quality of life.

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3.0 Methodology

3.1 Research Overview

With the increase of an aging population and the prevalence of Alzheimer’s

disease and related dementias in Canada, research that supports innovative

approaches to independent living and care for people with dementia is greatly needed.

Building on existing literature, this study will focus on discovering whether

environmental cues such as directional arrows that point to rooms (eg. “this way to living

room”) and templates that look like glass covered cupboard doors aimed at helping a

person with dementia, will assist them find things in cupboards, and help to support

memory loss.

For purposes of this study, the term “mild cognitive impairment” (MCI) is defined

as a brain disorder related to memory, where memory problems are greater than

memory loss that is normally expected with aging. The family member/informal

caregiver (FM/IC) in this study can be defined as any individual, related by kin or

otherwise, that resides within the same household as the person with mild cognitive

impairment. The family/informal caregiver may assist their loved one with activities of

daily living.

Research Methodology This research consists of a one-way dyad study, where two populations will be

studied. The primary participant in this study will be the family member/informal

caregiver (FM/IC), where the family member with dementia will be the second

population studied, indirectly, though observations made by the FM/IC.

A series of quantitative research questions, in the form of pre-study and post-

study questionnaires, will be conducted to examine changes in behaviour related to

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wayfinding. This will be complimented by qualitative observations recorded (see section

4.3) by the FM/IC of the responses of their family member with dementia with the

cupboard door templates and directional arrows that are implemented into their home.

3.2 Hypothesis and Research Objectives

We hypothesize that the implementation of these cupboard door templates and

directional arrows will help people with dementia find the things they need and places

they wish to go around their home more effectively. Furthermore, we feel our design

templates will help decrease responsive behaviours and contribute to increased

functional capacity, independence, and quality of life.

Research Questions

a. Will the use of cupboard door design templates and environmental cues within the home help support memory, and promote independence for those living with dementia?

b. Will the use of cupboard door design templates and environmental cues help lessen the burden for family/informal caregivers?

c. Will the use of cupboard door design templates and environmental cues positively impact “problematic” or responsive behaviours?

3.3 Data Analysis

Data will be collected and responses analysed, looking for distinguishing

similarities and differences in outcomes. Qualitative interviews will be transcribed for

quality purposes. Findings will be shared with community advisor(s) and analysed to

contribute valuable feedback to the study from important stakeholders. A final report in

the form of a thesis will be written, incorporating the existing body of knowledge of

environmental home design for dementia and the findings, discussions, and future

implementations provided from this study.

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3.4 Ethical Considerations

This research has received ethical clearance. All participants are informed in

writing of their rights as a participant, potential benefits and risks of this study,

confidentiality and their right to withdraw. To respect the choice of the participant with

dementia, a letter of information and assent is provided prior to participating in the

study. There are no conflicts of interest present in this study.

3.5 Limitations and Recommendations for Future Research

The purpose of this study will only measure wayfinding and environmental cueing

strategies. This does not include measuring task completion, although we recognize

future research is needed to address this important aspect.

Aspects from assessment tools, such as the Wayfinding Effectiveness Scale

(WES) and the Home Environmental Assessment Protocol (HEAP) have been

recognized in some sections of this study. However, these tools apply to

institutionalized settings and/or do not adequately account for wayfinding strategies and

environmental cueing in their assessment. We recognize this gap in information and

understand that implications from these tools may not adequately address or account

for the needs of people with dementia in non-institutionalized settings.

4.0 Results

4.1 Pre-Study Questionnaire

Case studies have been created to help better understand the unique

background, needs and challenges faced by the two families who participated in this

study. Both families reside in the areas of Hamilton, Halton, Haldimand Norfolk, and

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Brant, Ontario, and were recruited through their local Alzheimer Society. The templates

used in the study were selected independently by each of the families to help better

meet the individual needs of their family member with dementia. Their names have

been changed to respect their confidentiality and protect their privacy.

Table 4.1A Case Study #1

At age 84, Roger lives with his daughter in an apartment and has been diagnosed with moderate dementia for one to three years. His daughter, Sue, assists her father with meal preparation and/or feeding; helping to locate commonly used items within their home; as well as helping her father manage his medications and appointments. Sue notices that her father has difficulty finding his way to the hallway outside his apartment, as well as his way around the kitchen. Roger has been rarely known to wander. Sue reports that her father very often experiences feelings of depression, frustration, confusion and anxiety. Sue has reported spending eleven hours or more per day assisting her father with dementia and is the primary caregiver.

Table 4.1B Case Study #2

At age 88, Helen lives with her daughter’s family in a house and has been diagnosed with moderate Alzheimer’s disease for one to three years. Helen also has macular degeneration, making it difficult for her to see things clearly. Her daughter, Jane, assists her mother with some personal hygiene and dressing; helps her mother to locate commonly used items within their home; as well as assisting with meal preparation and/or feeding. Jane notices that her mother has difficulty finding items in the kitchen cupboards, as well as contents within Helen’s dresser drawers in her bedroom. Helen does not have difficulty finding her way around the house and has been rarely known to wander. Jane reports that her mother often experiences feelings of frustration, anger, confusion and anxiety. Her daughter and her family report spending four to six hours per day assisting their mother with Alzheimer’s disease.

In the pre-study questionnaire, family member/informal caregivers (FM/IC) were

asked a series of quantitative questions regarding the level or frequency of difficulty

their family member with dementia experienced in regards to finding commonly used

items around the home (for example: cups or bowls in kitchen cupboards, eating

utensils, personal hygiene items, or clothing for dressing); finding their way around the

25

home related to specific rooms or areas; forgetfulness regarding the purpose for

entering a room and/or completing a task/activity; prevalence of responsive behaviours,

such as expression of feelings of frustration, anger, confusion and/or anxiety; as well as

the level of independence of their family member with dementia. The questions reflected

in the graph in Table 4.1C, were answered on a scale of one to five, with one

associated with low frequency or level of difficulty and five associated with high

frequency or level of difficulty. When asked to rate their family member with dementia’s

level of difficulty in finding commonly used items around the home, such as objects

concealed in kitchen cupboards, personal hygiene items, or clothing for dressing, both

families reported frequent difficulty, rating four out of five on the level of difficulty. For

Case Study #2, issues surrounding difficulty of their family member with dementia in

finding their way around the home was reported as non-problematic. For Case Study

#1, the family reported that their family member with dementia sometimes had difficulty

finding their way around the home, with special focus on the kitchen area as well as

direction to the apartment hallway.

As illustrated in the graph in Table 4.1D, questions were also rated on a scale

from one to five, with one associated with a low level of independence or a low

occurrence rate and five associated with high levels of independence or regular

occurrence. When asked to rate the occurrence that the family member with dementia

completed tasks/activities that they originally set out to accomplish when entering a

room, both families reported “sometimes”, rating three out of five in regular occurrence.

When asked to rate the level of independence, Case Study #1 reported that their family

26

member with dementia was “somewhat independent”; while Case Study #2 reported

“not very independent” for their family member with dementia.

Pre- Study Questions: Q4: Does your family member have difficulty finding commonly used items around the home (for example: cups or bowls in kitchen cupboards, eating utensils, personal hygiene items, or clothing for dressing)? Q5: Does your family member have difficulty finding their way around the home (for example: finding the washroom, their bedroom, living room, or kitchen)? Q6A: How often does your family forget their purpose for entering a room and/or completing a task/activity? Q6B: Does your family member experience feelings of frustration, anger, confusion, anxiety when/if this forgetfulness occurs?

Pre-Study Questions Cont’d..: Q9: How often does your family member complete tasks/activities they originally set out to accomplish? Q10: Overall, what level of independence would you rate your family member with dementia?

Results from the pre-study questionnaire reflect that the persons with dementia

do demonstrate difficulty finding commonly used items around the home. As well, there

is a strong presence of responsive behaviours such as feelings of anger, frustration,

4

3

4

5

4

1

3

4

0

1

2

3

4

5

6

Question #4 Question #5 Question #6A Question #6B

Sometimes

Table 4.1C: Pre- Study Questionnaire Results Questions #4 - #6B

Case Study #1

Case Study #2

Always

Frequently

Rarely

Not At All

3 3 3

2

0

1

2

3

4

5

Question #9 Question #10

Sometimes/Somewhat Independent

Table 4.1D: Pre-Study Questionaire Results Questions #9 and #10

Case Study #1

Case Study #2

Regularly/Very Independent

Rarely/Not Very Independent

27

confusion and/or anxiety in both individuals. Levels of independence reflect medium to

low score ratings and clearly portrays an influence on the FM/IC with the number of

hours spent assisting their family member with dementia ranging from four to eleven or

more hours per day. Through the implementation of the templates within participants’

homes, the results have responded to all three research questions originally posed in

earlier sections of this thesis. To reiterate, these questions are:

a) Will the use of cupboard door design templates and environmental cues within

the home help support memory, and promote independence for those living with dementia?

b) Will the use of cupboard door design templates and environmental cues help lessen the burden for family/informal caregivers?

c) Will the use of cupboard door design templates and environmental cues positively impact “problematic” or responsive behaviours?

4.2 Description of Templates, Directional Arrows, and Signage Used in the Study After the pre-study questionnaire was completed, families were provided with

example templates and Memory M-AID© pamphlets which showcased the products

available for use in this study. Family members/informal caregivers were encouraged by

the student investigator to choose products that would best meet the individual needs

and preferences of their family member with dementia. Products were developed

specifically for the client, taking special consideration of important design elements such

as word-specific language used on the signage, item-specific labels and font size, in

attempt to better meet the individual’s abilities and interests.

For Case Study #1, the focus was primarily to implement templates on the

kitchen cupboards. The family ordered four templates for the kitchen cupboards and

they were installed according to similar objects and the natural routine of their family

28

member with dementia. The family also implemented the only directional arrow used in

this study to help their family member with dementia in directing them to find the exit to

their apartment and main hallway of the building. This was important to install, as the

FM/IC feared for her father’s safety, where the secondary exit to their apartment

consisted of a high ledge and posed a dangerous tripping and/or falling hazard. The

directional arrow simply read “hallway” in large, Arial, bolded font whose wording was

specifically tailored to what was most familiar to the individual. Furthermore, additional

wording labels were requested and designed for the fridge to help their family member

with dementia find commonly used items within their fridge. The family member/informal

caregiver handwrote on the labels the locations of each item within the fridge, to further

orientate the location of the object. An example of the labelling used would read:

Ketchup (on door) or Bread (top shelf). Additionally, a suggestion was recorded in the

Observation Journal, as well as during a post-study interview with the FM/IC, that the

family member with dementia, was interesting in implementing labels for the bedroom

dresser drawers to help better locate its contents. However, when this was followed- up

on, the family member with dementia no longer wished to have the labels ordered and

implemented into the home. The family member/informal caregiver was encouraged to

contact the student researcher if anything changed and if this was something their

family would like to try at another time. This request is still pending.

For Case Study #2, special consideration had to be taken when choosing

appropriate templates and signage to best accommodate for the vision impairments

caused by the presence of macular degeneration. Five templates were implemented

into the kitchen, but interestingly, the FM/IC chose to cut the templates to only include

29

items that were familiar and available for the family member with dementia. For

example, a full original template could consist of items located on three shelves, such

as plates on the bottom shelf, cups on the second shelf, and wine glasses on the top

shelf. For this family wine glasses were not used so the image of the wine glasses and

top shelf were trimmed from the template. This was done to prevent any confusion to

the family member with dementia and to better ensure error-free cueing. In the

bedroom, labels with large font were placed on two dressers, indicating the contents

and clothing inside each of the drawers. Again, word-specific language was used that

was best understood by the individual with dementia. For example, when deciding

which words to use for the dresser, the student investigator asked what the family

member would name the items located in each drawer. It is important to ensure client-

specific wording when designing labels so that they are appropriate, personal and

meaningful. A template was also used for this family to help redirect their loved one with

dementia away from the laundry room. Unfortunately, font size as well as low lighting at

the location where the template was implemented resulted in low visibility and proved to

be ineffective or useful for the family member with dementia.

4.3 Observation Journal

An observation journal was completed by both FM/IC of the families participating

in this study, capturing how their loved one with dementia interacted with the new

templates and signage for the first five to seven consecutive days following

implementation. The journal consisted of five questions in total, which helped to guide

the FM/IC in recording their observations. Questions were related to the helpfulness of

the templates; any changes found related to behaviour or mood; ability to better locate

30

items or find their way around the home; any changes in level of independence; as well

as any negative outcomes related to the templates. Resistance and feelings of

frustration towards the new templates were observed by both families in the study

during the first few days of implementation. One family member/informal caregiver

stated: “Dad was offended with the one sign that showed the hallway door, but he really

liked the cupboard door signs”. Overtime, and with explanation of the purpose and

meaning of the templates within the home, the family members became more at ease

with the templates. By the third day of implementation, both families observed a positive

change in the interaction by the family member with dementia and the templates. The

family member/informal caregiver from Case Study #1 recorded a major change in her

father’s behaviour:

“Dad use[d] to get frustrated when he wanted to get things for himself, not

remembering where things are. He would settle for things that would be easy to

see – not what he wanted. He can now go directly to the cupboard and the item

he wants.”

The family member/informal caregiver from Case Study #2 also recorded her mother’s

interaction with both the kitchen cupboard templates and the dresser drawer labels. She

wrote:

“Today I noticed she stopped and looked at the picture before reaching [for] a

cup to pour a coffee… she [also] stopped and read the labels on the drawers and

took a moment to think before opening what seemed to be the one she wanted.”

By day four, the family member with dementia from Case Study #2 was observed using

the labels on her bedroom dressers to put her laundry away, as well as finding her

clothes in the morning for dressing. The family member/informal caregiver noticed that

the templates affected her mother’s level of independence by reflecting that in the past,

her daughter would put away all of her mother’s laundry. But today, her mother was

31

able to put all of her clean clothes away with nothing remaining on her bed and without

the help of her daughter. The family did not report any significant changes related to

mood through observation. However, the family from Case Study #1 noticed a change

in her father’s level of independence as well as his mood, stating that “Dad seems more

ready to go and get[s] things himself.”

By day five, the FM/IC from Case Study #1, eluded to an interesting outcome

which was not predicted to occur in this study. The family member/informal caregiver

highlighted the response of a personal support worker (PSW) who visited their home

that day and their reaction to the directional hallway arrow. It was not considered how

the use of these templates could also help supportive care in the home as well. The

FM/IC noted,

“We had another PSW come in and she loved the sign and commented on the hallway [directional arrow] sign, saying it could be great [to have] in case of a fire”. This directional arrow was used to help divert from a dangerous tripping and/or falling

hazard located at the apartment’s secondary exit. The fact that this sign also aids in

promoting safety of individuals in the case of an emergency, further adds to the

credibility and importance of using these templates and directional arrows within the

home.

By the end of the observation period, both families reported an increase in level

of independence and overall more ease experienced when locating objects and places

around the home. Both have noted a noticeable decrease in the number of questions or

clarifications asked by the family member with dementia. The occasional question

regarding the purpose behind the templates and signage did arise after the seven day

32

observation period, but reassuring explanations helped ease any confusion. For Case

Study #1, a significant change concerning the resistance toward the templates was

captured in an ending quote, stating “Dad comments to all that come in about the signs,

about how well they work and he is very proud of them.” This success clearly depicts

the positive influence these templates can have on individuals living with dementia.

4.4 Post-Study Questionnaire The post-study questionnaire was conducted after the templates were being

used in the home for at least three weeks. Both questionnaires were conducted either in

person or over the phone, to allow for the opportunity to gather both quantitative and

qualitative data through the use of an interview consisting of both open and close-ended

questions. The interviews lasted approximately half an hour to forty minutes and were

comprised of fifteen questions in total. The post-study questionnaire was conducted by

the student investigator who asked the FM/IC to answer the same questions used in the

pre-study questionnaire regarding topics related to wayfinding, behaviours, and levels of

independence. This time, the FM/ICs were asked to reflect and comment on the current

condition within their home with the templates, directional arrows, and/or labels now in

place. Interestingly, all questions related to our three research questions proved

promising results, further strengthening our original hypothesis that the implementation

of these cupboard door templates, directional arrows, and labels will help people with

dementia find the things they need and places they wish to go around their home more

effectively. Furthermore, the results speak true to our prediction that the design

templates will help decrease responsive behaviours and contribute to increased

independence and quality of life and lessen the burden of dementia for FM/IC.

33

Results shown in the graph in Table 4.4A, illustrates a decrease in average

numbers of hours spent by the FM/IC assisting their family member with dementia by

both families after the templates and signage are being used within the home.

As seen in the graph in Table 4.4B below, levels of difficulty were measured in relation

to the family member with dementia locating items and finding their way around the

home, both before and after template and signage implementation. When measuring

the difficulty experienced by the family member with dementia in locating commonly

used items within the home, results by both families showed a decrease in the level of

difficulty with the use of the templates and signage being used in the home. When

measuring the level of difficulty experienced in relation to the family member with

dementia finding their way around their home, a decrease in difficulty was shown for

Case Study #1, where the directional hallway arrow template was used. Case Study #2,

consistently reported in both the pre-study and post-study questionnaires that this ability

to find their way around the home was not applicable to their loved one with dementia,

reporting that their family member did not experience difficulties related to this.

11

3

5

3

0

2

4

6

8

10

12

Before Templates After Templates

Nu

mb

er o

f H

ou

rs

Table 4.4A: Average Number of Hours Spent by Caregiver Assisting Family Member with Dementia

Case Study #1

Case Study #2

34

The results surrounding the presence of responsive behaviours in the family member

with dementia, as illustrated in the graph in Table 4.4C, indicate a decrease since the

implementation of the templates within the home. In the interview with Case Study #1,

the FM/IC reported on the decrease of anxiety and frustration with the use of the

templates in the home, stating that: “[There was] not as much frustration, [Dad] is

quicker in the kitchen, so it doesn’t take as much time. I feel more at ease and I’m sure

Dad does too.” However, in the interview with Case Study #2, the FM/IC did not report a

noticeable decrease in levels of agitation, frustration or confusion, but noted that “less

questions” were being asked now that the templates and signage were being used in

their home.

4

3

1 1

4

0 1 0 0

0.51

1.52

2.53

3.54

4.5

Difficulty LocatingItems Before

Templates

Difficulty FindingWay BeforeTemplates

Difficulty LocatingItems AfterTemplates

Difficulty FindingWay AfterTemplates

Leve

l of

Dif

ficu

lty

Table 4.4B: Level of Difficulty Experience By Family Member with Dementia in Locating Items and Wayfinding Before and After Use

of Templates

Case Study #1

Case Study #2

35

Results shown in the graph in Table 4.4D, indicate that the levels of independence in

both families increased with the use of templates and signage in the home. In Case

Study #1, the FM/IC rated the level of independence of her father as “very independent

when it [came] to the templates”. For Case Study #2, the FM/IC noted a “somewhat”

change in level of independence in her mother, stating that:

“…she is certainly better at putting the laundry away. That would be a plus. Because I can put it on her bed, and it used to just sit there and wait for me to put it away and now she knows where it goes.” Due to the comorbidity of dementia and macular degeneration in the family member

with dementia from Case Study #2, the presence of Helen’s vision impairment posed a

unique situation and interpretation of results. The impairment is a contributing factor

when disseminating the results found for Case Study #2 as this may influence the level

of effectiveness of the templates if they are not adequately meeting her unique needs. A

suggestion can be made to pair additional sources of cueing that recognize and

enhance Helen’s strengths and existing abilities, whether the cue is auditory or tactile in

nature.

5

1

4

2

0

1

2

3

4

5

6

Presence of Responsive BehavioursBefore Templates

Presence of Responsive Behaviours AfterTemplates

Leve

l of

Occ

urr

ence

Table 4.4C: Presence of Responsive Behaviours in Family

Member with Dementia Before and After Templates

Case Study #1

Case Study #2

36

Contrasting results were found when FM/IC were asked if the use of templates in the

home, helped increase food intake for their loved one with dementia. In Case Study #1,

fridge labels were suggested by the family to help their family member with dementia

better find items located in the fridge. After the templates were implemented, the FM/IC

noticed an increase in food intake, as her father was able to prepare his own breakfasts

and lunches. The family member/informal caregiver still prepared all dinners and

cooked meals. For Case Study #2, the FM/IC reported no increase in food intake,

stating that eating levels were consistent as before. The family member/informal

caregiver prepares all meals for her family member with dementia.

When asked to rate the usefulness of the templates and signage used within the

home, responses ranged from “useful” to “very useful”. Both families also reported a

change in their loved one’s ability to complete the tasks/activities they originally set out

to accomplish, stating that this now occurs “regularly” with the templates in place.

3

5

2

3

0

1

2

3

4

5

6

Level of Independence BeforeTemplates

Level of Independence AfterTemplates

High Level of Independence

Table 4.4D: Level of Independence of Family Member with Dementia Before and After Templates

Case Study #1

Case Study #2

Low Level of Independence

37

4.5 Participant Feedback

Participants were asked to provide feedback on what worked well and where

improvements could be made in relation to future template design. Families reported

that the pictures were viewed as “more inviting” and worked well for the kitchen

cabinets. The pictures that are used in the kitchen templates were said to help identify

cupboard contents. Word labeling, along with large font size, worked well for the fridge

and dresser drawers, specifying that it was more item-specific. Future suggestions such

as reminders or step-by-step guides that are task-specific, such as signs that read

“Please wash your hands” or guides to using the coffee-maker, were mentioned.

However, as outlined in this study’s limitations, the purpose of this study only measured

wayfinding and environmental cueing strategies and did not include measuring specific

task completion, although we recognize future research is needed in order to address

this important aspect. Suggestions related to the research design, found that an

accompanying communication or a Frequently Asked Questions guide would help family

members better explain the meaning of the templates and signage in the home to the

family member with dementia. Prior to participation in the study, interested families were

provided with a letter of information and consent for both the FM/IC as well as the

person with dementia. However, a more in-depth guide may help support FM/IC,

improve understanding of the templates and signage, and help to avoid insulting or

upsetting the family member with dementia during the initial implementation of the

templates.

Lastly, the families were asked to reflect on their experience of participating in

this study, what they learned and how this study could help or not help others. The

38

family member with dementia from Case Study #1, commented on what he learned from

the study and the impact of the templates used within his home, stating:

“[I learned] to use my eyes… to get my mind going [points to head]. It helps a lot, to look and [go] “oh there’s a picture for sugar or for whatever you need, you know… the PSW (personal support worker) can now find whatever she needs, because they can just look too... anyone that comes in, it helps them… it’s nice”

The family member/informal caregiver from Case Study #2 shared her views concerning

the sensitive nature when providing appropriate support to family members with

dementia, as well as the need for family caregivers to be willing to try new innovative

approaches to helping people with dementia live better lives. She reflects on her

experience, stating:

“It’s definitely, um… brought to light the need to help her maintain her dignity,

and not to… to be careful how we walk that fine line because I think there is a

fine line in making them feel, as my mother uses the term “losing it”, and to

highlight the fact that they are “losing it” would be worse… there are things we

can do, that we don’t even know we can do, you know like labelling things or

putting reminders up, and I have never really thought of it… we might just need

those little cues... I know that I wasn’t probably fitting your ideal candidate for [the

study] because of my mom’s vision problems… but then when you think about it ,

it could almost be even more important because she not only has the dementia

but has vision problems as well… so to me it’s even more important for people

with [special needs]… I think it has highlighted the need to put in as many

measures as you can to make them function to the best of their ability, with the

least amount of supports... I was willing to get anything I needed but I wasn’t

aware that this was a possibility until I heard about it recently and thought “Well,

hey! Anything that can help my mom, is going to help her.” … I don’t think I would

have thought about it on my own.”

39

5.0 Discussion

The findings presented in this study will add to the much needed body of

literature on environmental design for dementia, reaffirming the need for further

research in this field of study. From the research previously explored, it can be

understood that people with dementia experience an altered sensitivity to environmental

conditions, which can lead to responsive behaviours if needs are not properly

addressed or accounted for. This has proven to add further stress and burden of care

on family members, which in some cases can lead to institutionalization (van Hoof et al.,

2010). From the results of this study, while building upon the foundational literature on

wayfinding, four central themes have emerged. These themes include: discussion on

effective wayfinding strategies ; responsive behaviours, independence and self-esteem;

important design features of environmental cueing; as well as study challenges and

recommendations for further research, to be explored in detail.

5.1 Effective Wayfinding Strategies

According to Cognitive Theory, people with dementia exercise difficulties with

multi-step tasks due to a deficit in executive functioning, planning, sequencing and

attention control (Wherton and Monk, 2010). As seen in this study, by placing support in

the environment the results have shown that the use of templates and signage has

helped cue individuals with dementia to complete tasks they originally set out to

accomplish. The existing body of knowledge suggests that by replacing internal cueing,

which is affected by dementia, with external memory cues, such as placing information

in the environment at the time of information retrieval, this can reactivate internal cues

(Charness and Holley, 2001; Elliot, 2010). This was seen in the family member with

40

dementia’s response from Case Study #1, explaining how the templates helped remind

him “to use my eyes… to get my mind going”. This is a classic example of when

external memory cues which are placed in the environment at the time of information

retrieval can help to reactivate internal cues. The purpose of supporting the memory

loss is that the learned habits then become automatic, thereby removing the need to

rely on declarative memory. By supporting declarative memory loss, with external

memory cues, the ability to find destinations, objects, and perform activities of daily

living (ADLs) independently is enhanced (Charness and Holley, 2001; Elliot, 2010).

5.2 Responsive Behaviours, Independence and Self-Esteem

As stated in the literature, signs and symptoms of dementia are progressive and

irreversible in nature, yet responsive behaviours are often treatable and/or reversible

with the use of an appropriate care approach (Aberdeen et al., 2010; Elliot, 2010). With

the onset and progression of dementia, the ability to complete ADLs, such as toileting,

dressing, and eating, are often compromised (Wherton and Monk, 2010). This decrease

in ability affects the quality of life for people living with dementia. This may include, but

is not limited to: increased need for personal assistance; increased anxiety; poor self-

esteem; increased isolation; and possible relocation to institutionalized care (Wherton

and Monk, 2010). With the use of templates in this study, results show an increased

ability by the person with dementia to find desired objects and places around the home

on one’s own. As seen in the shift from pre-study to post-study results, examples are

evident of the decreased dependence on others for personal assistance, and the

observations made by families in the decreased expressions of feelings of anxiety and

“feeling more at ease” as experienced by both the FM/IC as well as the person with

41

dementia. In Case Study#1, the family member with dementia was reported exhibiting

higher levels of self –esteem, by sharing his feelings of pride towards the templates

within his home. This is evidencew that the decrease in responsive behaviours, such as

feelings of anger, anxiety and depression presented in this study has positively

impacted the levels of independence, self-esteem and self-worth in the family member

with dementia.

Margaret Dempsey once said that “the more cognitively impaired a person is, the

more the environment accounts for their behaviour” (Elliot, 2012). As the goal of this

study is to try to maintain and enhance levels of independence so that family members

with dementia can feel better about themselves, foster self-esteem, purpose and

meaning - all of these things will come together when the environment is supportive as

we are simply “supporting the person with dementia” (Elliot, 2012).

5.3 Important Design Features of Environmental Cueing

Research by van Hoof et al., in conjunction with the results presented from Case

Study #2, remind us of the importance of understanding co-morbidity and age-related

sensory changes that can pose certain challenges when creating appropriate care

approaches and supportive environmental design (van Hoof et al., 2010). Design

elements need to incorporate stimulation and support for all aspects of sensory

experience, addressing mobility, hearing, vision, and olfactory impairments due to aging

and/or the progression of dementia (Brawley, 2001). Furthermore, as indicated in

previous research, in order to achieve successful environmental design, emphasis

should be placed on knowing the user and their goals (Charness and Holley, 2001).

This was achieved in this study by ensuring that word-specific language, task-specific

42

cueing, font size and product choice was tailored to best accomodate the needs of the

individual with dementia.

Results found that the wording on the templates and signage needed to be

tailored to individual specific needs. Phrases, terms, and colloquialisms have proven to

be more effective if they are unique to the individual with dementia. It is also important

to acknowledge different types of languages and cultures when designing templates.

Building on the above mentioned, every effort was made to give families and their loved

ones with dementia the ability to choose products that best address their current needs.

For example, the use of toileting signs for the bathroom was not applicable for each

family. The designs of the templates have been altered as best as possible to better suit

the needs of the participating families. An example of this was the use of font type and

size that was adjusted for a family member with macular degeneration. We incorporated

larger, bolded font in Arial accompanied by a yellow background to further increase

visibility and colour contrast.

Templates associated with toileting were not used in the study in any of the

homes, due to a resistance from family members, as they felt they were not appropriate

for their family member with dementia at this time. From observations made in this

study, there was proven difficulty in suggesting changes in a private household or

testing specific products, as the main purpose is not to offend family members by

placing templates which are viewed as offensive. The goal is to help normalize the use

of environmental cueing, aiming to see the person behind the dementia. When the

environment is normalized, so is the person with dementia (Elliot, 2012).

43

Careful consideration was taken into account when implementing the templates

and directional arrows into the home. Measures were taken to best ensure there was

adequate lighting and visibility of the signage within the home, as well as ensuring all

precautions were considered to ensure the family members’ safety to the best of our

ability. Directional arrows were not placed on floors, as this was thought to result in

slips, trips, or falls. Furthermore, it is important to highlight another positive outcome

from using the templates and environmental cueing within the home, as this can help

reduce excess disability (Bryson, 2012). Design features that recognize and eliminate

barriers; accommodate for age and dementia-related deficits; as well as enable choice,

preserve autonomy and assign meaning, will help in supporting people with dementia

and improving their quality of life (Brawley, 2001; Marquardt et al., 2011).

5.4 Challenges

5.4A Participant Withdrawal

Due to the nature of the population this research proposed to study, difficulty in retaining

participants has been a challenge. The total number of recruited participants for this

study was seven families, through more than six recruitment presentations conducted

by the student investigator and with eventually five families in total withdrawing from the

study. Some reasons for withdrawal included pre-existing time restrictions of the FM/IC.

Some families felt that the appropriateness of the templates did not match the individual

with dementia at the time, stating that they felt these products would not be beneficial.

It also is important to highlight that some of the participants, including the family

member with dementia, reported an awareness of the need for these templates and

welcomes the support and environmental cueing into their home. This is important when

44

analyzing the reasons for withdrawal as some families who withdrew from the study,

reported that they did not want or need these templates in their home. But here is a first-

hand account from a person with dementia, who understands the use of the templates

and signage and is confident that the use of environmental cueing will be helpful.

As suggested previously, the possibility of providing families with tools, such as

an in-depth guide regarding frequently asked questions in this study, may help better

support the FM/ICs in improving the understanding of the templates and signage in the

home, helping to avoid insulting or upsetting the family member with dementia during

the initial implementation of the templates.

5.4B The Use of Artwork Versus Photographs

There has been some debate on use of artwork as seen in the templates used in

this study versus photographing cupboard contents to place a photo on kitchen

cabinets. The use of artwork best allows for control and manipulation of important

design features such as colour contrast, symbolism, and the reduction of glare to

produce a hyper-realistic look. The use of photographs would not guarantee these

important design features.

It is also important to note an important limitation of this study. It is important to

understand that when families rearrange the cupboards to better fit the template

artwork, this can counteract with learned spatial layouts, and over-learned habits and

routines of the person with dementia. An example of this concern was found when a

template which consisted of a picture of a teapot, cups and saucers was placed in the

home, yet the family did not own a teapot. However, it could be very likely that the

45

person with dementia may have owned a teapot at one point in their lives and may at

some point begin looking for their teapot. This becomes problematic when the person

with dementia now resides in their children’s home, as these items may not be available

to them. It is important try to best ensure that the template and the activity associated

with the template produces an error-free result, as this is essential in learning new

information and forming new habits (Provencher et al., 2009). If not, this could lead to

greater confusion and possibly increase the presence of responsive behaviours. It is

important to reinforce the cognitive maps used by the individual with dementia. We do

not want to change what makes most sense to the individual with dementia, and must

also take into account personal habits and personal histories. Although the templates

were designed to accommodate for items that are most common in people’s homes, we

cannot guarantee that families will own all of the items that are displayed on the

templates. Future research on comparing the use of artwork to photographs would be

interesting to conduct to see if photographs could in fact better accommodate families

and their loved ones with dementia.

6.0 Conclusion

As clearly depicted in the research and study results, the well-being and

behaviour of people with dementia is strongly influenced by the design of the

environment (Marquardt and Schmeig, 2009).This is why the environment plays such a

significant role in the lives of people with dementia. If the environment is supportive in

nature, research shows that this can enable a person with dementia to achieve their full

potential as an active participant in their daily lives (Davis et al., 2009).

46

As the purpose of this study is only to measure wayfinding and environmental

cueing strategies, we recognize that future research in measuring task completion is

needed. Policy and assessment tools, such as the Wayfinding Effectiveness Scale

(WES) and the Home Environmental Assessment Protocol (HEAP), need to better

accommodate for non-institutionalized settings, taking into consideration the cost-

effectiveness and accessibility for families of new innovations in environmental design

for dementia. Furthermore, future research on the connection between environment and

responsive behaviours for people with dementia, such as this study, needs to be further

developed, funded and implemented. With the increasing aging population, the need

could not be greater for innovations in wayfinding. Wayfinding strategies and supportive

environmental solutions need to incorporate intelligent and appropriate elements of

design. By doing so, we are one step closer in helping people with dementia live with

the disease, and lead more independent lives that promote an enhanced quality of life.

47

7.0 References

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promote staff learning and problem-solving in residential dementia care.

Dementia, 131-151.

Algase, D., Son, G.-R., Beel-Bates, C., Song, J., Yao, L., Beattie, E., et al. (2007). Initial

Psychometric Evaluation of the Wayfinding Effectiveness Scale. Western Journal

of Nursing Research, 1015-1032.

Alzheimer Society of Canada. (2011, January). Alzheimer Society of Canada Media

Centre: 2011 Alzheimer Disease Fact Sheet. Retrieved November 17, 2011, from

Alzheimer Society of Canada: www.alzheimer.ca/english/media/adfacts2011.html

Brawley, E. (2001). Environmental design for Alzheimer's disease: A quality of life issue.

Aging & Mental Health, 79-83.

Bryson, D. (2012, March 28). Personal Conversation. Alzheimer Society of Hamilton,

Hamilton, ON, Canada.

Charness, N., & Holley, P. (2001). Human factors and environmental support in

Alzheimer's disease. Aging & Mental Health, 65-73.

Cioffi, J., Fleming, A., Wilkes, L., Sinfield, M., & Le Miere, J. (2007). The effect of

environmental change on residents with dementia. Dementia, 215-231.

Davis, R., THerrien, B., & West, B. (2009). Working Memory, Cues, and Wayfinding in

Older Women. Journal of Applied Gerontology, 743-767.

Davis, S., Byers, S., Nay, R., & Koch, S. (2009). Guiding design of dementia friendly

environments in residential care settings. Dementia, 185-203.

Elliot, G. (2010). Montessori Methods for Dementia. Hamilton, Ontario: Gilbrea Centre

for Sutides in Aging, McMaster University.

Elliot, G. (2012, March 28). Personal Conversation. Hamilton, ON, Canada.

Fleming, R., Forbes, I., & Bennet, K. (2003). Adapting the Ward: for people with

dementia. Sydney, Australia: The Hammond Care Group.

Gitlin, L., Schinfeld, S., Winter, L., Corcoran, M., Boyce, A., & Hauck, W. (2002).

Evaluating home environments of persons with dementia: interrater realiability

and validity of the Home Environmental Assessment Protocol. Disability and

Rehabilitation, 59-71.

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Head, D., & Isom, M. (2010). Age effects on wayfinding and route learning skills.

Behavioural Brain Research, 49-58.

Kincaid, C., & Peacock, J. R. (2003). The Effect of a Wall Mural on Decreasing Four

Types of Door-Testing Behaviours. Journal of Applied Gerontology, 76-88.

Lemoncello, R., Sohlberg, M., & Fickas, S. (2010). When directions fail: Investigation of

getting lost behaviour in adults with acquired brain injury. Brain Injury, 550-559.

Marquardt, G., & Schmieg, P. (2009). Dementia-Friendly Architecture: Environments

That Facilitate Wayfinding in Nursing Homes. American Journal of Alzeimer's

Disease & Other Dementias, 333-340.

Marquardt, G., Johnston, D., Black, B., Morrison, A., Rosenblatt, A., Lyketsos, C., et al.

(2011). Association of the Spatial Layout of the Home and ADL Abilities Among

Older Adults With Dementia. American Journal of Alzheimer's Disease & Other

Demetias, 51-57.

Provencher, V., Bier, N., Audet, T., & Gagnon, L. (2008). Errorless-Based Techniques

Can Improve Route Finding in Early Alzheimer's Disease: A Case Study.

American Journal of Alzheimer's Disease & Other Dementias, 47-56.

Pynoos, J., Cohen, E., & Lucas, C. (1989). Environmental coping strategies for

Alzheimer's caregivers. American Journal of Alzheimers Disease and Other

Dementia, 4-8.

Sharlin, E., Watson, B., Sutphen, S., Liu, L., Lederer, R., & Frazer, J. (2009). A tangible

user interface for assessing cognitive mapping ability. Int. J. Human-Computer

Studies, 269-278.

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Torrington, J., & Tregenze, P. (2007). Lighting for people with dementia. Lighting

Research and Technology, 81-97.

van Hoof, J., Kort, H., Duijnstee, M., Rutten, P., & Hensen, J. (2010). The indoor

environment and the integrated design of homes for older people with dementia.

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266.

49

50

8.0 Appendices

Appendix 8.1: Pre-Study Questionnaire Results

Pre-Study Questions Case Study #1 Case Study #2

1. When was your family member diagnosed with dementia?

1-3 years

1-3 years

2. As a family member/informal caregiver, in what ways do you assist your family member with dementia? (Please check all that apply)

Assist with personal hygiene Assist with dressing Assist with meal preparation and/or feeding Assist with mobility Assist with locating common items used in the home Assist with finding certain rooms around the home Other (please specify): __________________

Assist with meal preparation and/or feeding Assist with locating common items used in the home Other (please specify): medications and appointments

Assist with personal hygiene Assist with dressing Assist with meal preparation and/or feeding Assist with locating common items used in the home

3. As a family member/informal caregiver, how many hours per day do you spend assisting your family member with dementia?

11 hours or more

4-6 hours

4. Does your family member have difficulty finding commonly used items around the home (for example: cups or bowls in kitchen cupboards, eating utensils, personal hygiene items, or clothing for dressing)?

Frequently (4/5)

Frequently (4/5)

5. Does your family member have difficulty finding their way around the home (for example: finding the washroom, their bedroom, living room, or kitchen)?

Sometimes (3/5)

Not at all (1/5)

51

6. A) How often does your family member forget their purpose for entering a room and/or completing a task/activity? B) Does your family member experience feelings of frustration, anger, confusion, anxiety when/if this forgetfulness occurs?

a) Frequently (4/5) b) Very Often (5/5)

Noting: depression, frustration, confusion, anxiety, sarcasm

a) Sometimes (3/5) b) Often (4/5)

7. Which areas of the home does your family member have difficulty finding their way to? (Please check all that apply)

Bedroom Washroom Kitchen Dining Room Living/ Family Room Laundry Room Other (please specify):_______

Kitchen only

n/a

8. Does your family member wander?

Rarely (1/5) due to physical impairment

Rarely (1/5)

9. How often does your family member complete tasks/activities they originally set out to accomplish?

Sometimes (3/5)

Sometimes (3/5)

10. Overall, what level of independence would you rate your family member with dementia?

Somewhat Independent (3/5)

Not very independent (2/5)

11. Other areas of concern/comments:

Behaviours: very angry when FM/IC leaves the home; Depression; fear of being alone; Concern for the FM/IC

n/a

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Appendix 8.2A: Observation Journal Results -Results from Case Study #1

Questions Day#1 Day #2 Day #3 Day #4 Day #5 Day #6 Day #7

1A. How do the templates and signs help your family member with dementia? 1B. In which ways did they NOT help?

Dad was offended with the 1 sign that showed the way to the hallway door. But he really liked the cupboard door signs. He said he is waiting for the fridge door sign He is finding is a lot easier. 1B: N/A

Still very convenient, making it easy for dad. He gets more relax[ed] when he goes for a coffee or breakfast 1B:N/A

Dad use[d] to get frustrated when he wanted to get things for himself, not remembering where things are. He would settle for things that would easy to see –not what he wanted. He can now go directly to the cupboard and the item he wants. 1B: N/A

Dad notices what would be great is pictures on his dresser drawers to say what is what drawer, for socks, underwear, etc. 1B:N/A

We had another PSW come in and she loved the signs and commented on the hallway [directional arrow] sign saying it could be great in case of a fire. 1B:N/A

Dad comments to all that come in about the signs about how well they work and he is very proud of them. 1B:N/A

Life has improved with these signs and a lot more signs I would buy for other areas in the home for more improvements. 1B:N/A

2. What kind of changes in their behaviour or mood have you noticed?

Dad is able to go directly to the cupboard that has what he need[s]

N/A N/A Dad seems more ready to go and get[s] things himself

N/A N/A N/A

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instead of looking in each one. My sister, PSW, and daughter love them and it also helps them when they come.

3A. Have you noticed your family member is able to locate objects and/or find their way around the home more easily? 3B. If so, what kind of changes have you noticed?

N/A N/A

Yes, big improvement N/A

N/A N/A N/A N/A N/A

4. How have the templates and signs affected your family member’s independence?

N/A

N/A N/A N/A N/A N/A N/A

5. Have you observed any frustrations related to the use of the templates?

N/A N/A N/A N/A N/A N/A N/A

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Additional Comments/ Observations

N/A N/A N/A An additional sign for coffee, tea, sugar, etc., would be great!

N/A N/A N/A

Appendix 8.2B: Observation Journal Results -Results from Case Study #2

Questions Day#1 Day #2 Day #3 Day #4 Day #5 Day #6 Day #7 3 weeks after implementation

1A. How do the templates and signs help your family member with dementia? 1B. In which ways did they NOT help?

Some confusion re: their presence [in the home].

Emptying the dishwasher, she sometimes seems confused but appreciated the suggestion of using the pictures. 1B:N/A

Today I noticed she stopped and looked at the picture before reaching a cup to pour a coffee. 1B:N/A

Used the labels [on her bedroom dressers] to put laundry away. 1B:N/A

They have helped with respect to putting some things away 1B:N/A

To some degree- she was [observed] using them 1B: occasionally she will [ask] why are these (the templates) [are] here but seems satisfied with the answer given

N/A In some ways, the person can be offended (sees them as childish) but understands when explanation is given

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2. What kind of changes in their behaviour or mood have you noticed?

Initially she did not say anything whether she did not see them or simply didn’t want to bring it up. We when asked her she said “ they were very nice pictures” Asked if they would help- she seemed offended but some-what comforted when we let her know it has helping out a student at school.

I do not believe her mood was affected by the placement of pictures. We had people over and this confuses her more [than] under normal circumstances

No change.

No mood change.

No mood change until her daughter asked why she hadn’t read the sign of the dryer that said “Don’t use during the day”. She failed to notice it altogether and apologized.

Just irritable when it was suggested she change her choice of clothing [due to weather]

Sometimes she seems low(mood) when she realizes she depends on others for things

Sometimes she spends time looking at pictures instead of opening [the] cupboard and guessing [where] to put things away

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3A. Have you noticed your family member is able to locate objects and/or find their way around the home more easily? 3B. If so, what kind of changes have you noticed?

In the first day, she continued to struggle as always to put things away from the dishwasher and ask for instruction. When suggesting the use of the pictures she answered “Oh!”

Today I noticed both finding the honey according to the picture and confusion in putting cups away.

Today she stopped and read the labels on drawers and took a moment to think before opening what seemed to be the one she wanted

For locating her clothes in the morning in drawers and putting clean clothes away.

She would normally leave more things to be put away by daughter after emptying dishwasher – seemed like less today.

Yes – will put laundry and dishes away; fewer left out for others to put away

Yes to some degree –clothes and dishes

To some degree, yes

4. How have the templates and signs affected your family member’s independence?

To some degree but perhaps too early to tell.

She appears to want to look as if she knows her way around the kitchen but when others (guests) are around, there is

To some degree

To some degree because clean laundry she has left for her daughter to put away [ in the past] and today she was

She seems quite independent today other than what kind of clothes [to wear] due to the weather unpredictability

To some degree

Yes Yes – [she] will not ask as many questions

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more confusion.

able to put it all away (nothing remaining on her bed)

5. Have you observed any frustrations related to the use of the templates?

Yes until we has a full discussion and she understood their use.

N/A She did state “what are these pictures doing here?” Explanation was given that we were helping a student at Mac out and they might also help her

No frustration noted.

No – except when she asks questions that she feel she should know. She was upset when I told her that she failed to read the sign on the dryer.

No, not really.

Only the occasional “What are these for”?

No, none.

Additional Comments/ Observations:

N/A

N/A N/A N/A N/A N/A N/A

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Appendix 8.3: Post-Study Questionnaire Results

Post- Study Questions Case Study #1 Case Study #2 1. With the use of templates in your home, in what ways do you

assist your family member with dementia? (Please check all that apply)

Assist with personal hygiene Assist with dressing Assist with meal preparation and/or feeding Assist with mobility Assist with locating common items used in the home Assist with finding certain rooms around the home Other (please specify):

___________________________________ None of these apply

Assist with personal hygiene Assist with dressing Assist with meal preparation and/or feeding Assist with mobility *No longer assists with locating common items used in the kitchen

Assist with personal hygiene Assist with dressing Assist with meal preparation and/or feeding

2. With the templates in place, how many hours per day do you spend assisting your family member with dementia?

1-3 hours *No longer helps in the kitchen

1-3 hours

3. With the templates in place, does your family member have difficulty finding commonly used items around the home (for example: cups or bowls in kitchen cupboards, eating utensils, personal hygiene items, or clothing for dressing)?

Not at all (1/5)

Not at all (1/5)

4. With the templates in place, does your family member still have difficulty finding their way around the home (for example: finding the washroom, their bedroom, living room, or kitchen)?

Not at all (1/5)

Not at all (1/5); same as pre-study; N/A

5. A) With the templates in place, how often does your family member forget their purpose for entering a room and/or completing a task/activity? B) With the templates in place, does your family member experience feelings of frustration, anger, confusion, anxiety when/if this forgetfulness occurs?

A) Not at all (1/5)

B) Not at all (1/5)

C) Notes: not as much frustration; quicker in the

A) Not at all (1/5)

B) Rarely (2/5)

C) PWD asks less questions

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C) Which feelings or behaviours do you feel have changed and what are the feeling or behaviours like now?

kitchen; FM/IC more at ease; PWD more at ease

6. With the templates in place, which areas of the home does your family member have difficulty finding their way to? (Please check all that apply)

Bedroom Washroom Kitchen Dining Room Living/ Family Room Laundry Room Other (please specify):_______________________

*Fridge, wrote on the template of the location of items in the fridge ( for example: Ketchup (on door); Bread (middle shelf), etc.) Reporting some difficulty with dresser but PWD was not interested in implementing signage for this Reported finding all rooms and exits well

N/A

7. With the use of templates in your kitchen, have you noticed an increase in food intake of your family member with dementia?

Yes, with fridge templates, PWD was able to make his own breakfasts and lunches. FM/IC still prepared dinner/cooked meals.

No, consistent as before

8. With the use of templates, how often does your family member complete tasks/activities they originally set out to accomplish?

Regularly (5/5)

Regularly (5/5)

9. With the use of templates in your home, what level of independence would you rate your family member with dementia now?

Very Independent (5/5)

Somewhat Independent (3/5)

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10. How useful were the template designs and signage in supporting your family member with dementia in the home?

Very Useful (5/5)

Useful (4/5)

11. We appreciate your comments and feedback on how we can improve our templates and signs to better support the needs of your family member with dementia. A) What worked well? B) How can we improve?

A) Picture viewed as

more inviting; worked well for kitchen cabinets Word Labelling worked well for the fridge because it was more item- specific

B) N/A

A)identifying what is in cupboards Large font size on Word Labelling

C) Reminders for items that are task-specific (for example: “Please wash your hands” sign; step-by-step guides)

12. Do you think there is anything we forgot to include or address in this study?

*Template design option which includes tea, coffee, peanut butter, jams, etc. * Interested to see if company could develop a template for large font calendar for scheduling appointment

Communication guide or frequently asked questions for family members to help them better explain the meaning of the templates in the home to the PWD. This would help improve understanding and help to avoid insulting or upsetting the PWD during the initial implementation of the templates.

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13. Did we pick the right templates for your loved one with dementia? If yes, what worked, did not work and why? If no, what should we have done?

Noted that the pictures are more inviting than the use of words

Suggested communication guide for families

14. A) What was your experience from this study? B) What did you learn?

“To use my eyes… to use my mind” noted by the PWD

There is a fine balance between offending and helping them, the need to maintain her mother’s dignity, adapt for her mother’s vision impairments

15. From your experience, how could this help others?

Noted that this also helps PSWs and other visitors in the home.

Noted that she was open to trying new things to help mother, to use as many measures to help them to the best of their ability with the least amount of support. “Well, hey! Anything that can help my mom, is going to help her” To become aware of what support is available to families.

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Appendix 8.4: Quotations from Study Participants

Case Study #1 Case Study #2

Researcher: With the templates in place, how many hours per day would you say you spend assisting your dad around the home?

FM/IC: I don’t have to do anything out in the kitchen

FM/IC: Well, in her bedroom, the use of labels have helped her because I will finish the laundry and she will put it away according to what it is now with the description of the drawer... You know last night… she went and got a short sleeved top, she just came back with something that didn’t match. You know, which is more probably [to do with] her eye sight more than anything, but she did go to the short sleeve blouses.

Researcher: With the templates in place are they still finding difficulty finding their way around the home?

FM/IC: not where the templates are, no, not at all.

Researcher: So with them in place, does your family member still have difficulty finding commonly used items , such as cups or bowls, clothes for dressing? FM/IC: No, not at all.

Researcher: So which feeling or behaviours do you feel have changed and what are they like now? So I guess I’ll ask first, what behaviours have you felt that have changed?

FM/IC: Uh, not as much frustration. Uhh, quicker in the kitchen, so it doesn’t take as much time… I feel more at ease… and I’m sure dad does too

FM/IC: She is certainly better at putting the laundry away. That would be a plus. Because I can put it on her bed, and it used to just sit there and wait for me to put it away and now she knows where it goes.

Researcher: How would you rate the level of independence now with the templates in the home?

FM/IC: oh, very independent when it comes to the templates, yes.

Researcher:: And how useful would you say they have been in supporting your family…?

FM/IC: Oh, day and night.

FM/IC: I watch her in the kitchen, she opens the cupboard where the label is for the cereal, and goes right for it and just helps herself. Now the thing that I do notice, is that she’ll put sugar on top of sweetened cereal. Which is really odd. But she finds it quite easily. Researcher: [Does] she finds [things] easily though? The main purpose of this study is to measure if they are able to get to the object that they are looking for. FM/IC: And she can, for sure. In the kitchen, when she’s emptying the dishwasher, she’s asking less questions and I’m finding less

63

things on the counter that she’s not sure of [where to put away]. There is still the odd thing that’s put in the wrong place but for the most part, there’s much less. So I have less things put in the wrong place and less things left on the counter for me to figure out where it goes.

Researcher: Is there anything that you think worked really well?

PWD: When the girl comes to help me, she knows where to go because she can just look at it and knows where to go.

Researcher: Ok, so we just wanted to get some comments to see what worked well and what we can improve on because we are continuously updating the products, so is there anything that worked really well with the templates? FM/IC: Umm, I found that it identified what it is in her bedroom [relating to her mother’s dresser drawers] was really helpful. Again, I found that putting in on, now this is the issue with her eyesight than the issue of what they’re for, but if it was 2D and not just the visual but also some kind of tactile thing so that there was some resistance to her opening something. *This refers to the need for additional cueing for persons with dementia who have additional impairment aside from their dementia, such as macular degeneration

Researcher: Is there anything else, with specifically to the templates, like the colour? Is the colour ok? Are you able to see it ok?

PWD: oh, yeah. No I have no trouble.

FM/IC: No, Everybody has commented how good it looks… everybody. And they’re comparing it, the PSWs, with one place that just has the words and she says it just doesn’t do the same. No…where the pictures are more…

PWD: Inviting

FM/IC: Ya, more inviting, and you don’t have to take the time to read it… you know right off the bat.

Researcher: What was your experience from participating in this study? What did you learn from this? FM/IC: Oh, it’s definitely,um, it sort of brought to light the need to help her maintain her dignity, and not to … to be careful how we walk that fine line because I think there is a fine line in making them feel, as my uses the term “losing it”, and to highlight the fact that they are “losing it” would be worse. And also that there are things we can do, that we don’t even know we can do, you know like labelling things or putting reminders up, and I have never really thought of it… and at the other end of the spectrum, we might just need those little cues.

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PWD: These have helped me a lot, really have helped me a lot… these pictures… they really have. The only thing I said is the fridge, because I don’t know where things are in the fridge and that’s the only thing I have trouble with. Is to go in there and find out where’s this.. you know

Researcher:: Do you think we picked the right templates for your home that are better for you? Do you think we are on the right track?

PWD: ya, for me anyway. I think so… the rest is very much telling me where to get it.

FM/IC: It’s directed at dad and what dad would use and the types of things he would need.

Researcher: [Does] it address your unique needs?

FM/IC: Pin points.

Researcher:Right, does it pinpoint your specific needs so it’s tailored to you [to the PWD] ?

PWD: As far as the bowls and mugs and.. that’s all I want to know

Researcher: What you have learned from this experience, how could this help others? FM/IC: Oh, I thought about it now since, and I know that I wasn’t probably fitting your ideal candidate for it because of my mom’s vision problems.. but then when you think about it , it could almost be even more important because she not only has the dementia but has vision problems as well, so you can just compensate by making the font bigger or like I said, make that challenge to open something , give it a little resistance… so to me it’s even more important for people with [special needs]. It would make more sense to me, for her, to increase that font and make sure that colour contrast is there.

Researcher: What did you learn from this experience, from this study?

PWD: To use my eyes… to get my mind going [ points to head]. It helps a lot, to look and [go] “oh there’s a picture for sugar or for whatever you need, you know” You…

FM/IC: [to father] …You don’t get as frustrated

PWD: Ya, you don’t have to go and open the door to find it.

Researcher: Right, it makes it a lot easier?

PWD: It certainly does.

Researcher: How would explain how this study has or hasn’t impacted your family? FM/IC: I think it has highlighted the need to put in as many measures as you can to make them function to the best of their ability, with the least amount of supports. When my mom was diagnosed, I went to the extreme. I went for support, I learned about it, and became knowledgeable and I was willing to get anything I needed but I wasn’t aware that this was a possibility until I heard about it recently and thought “Well, hey! Anything that can help my mom, is going to help her.” … I don’t think I would have thought about it on my own.

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Appendix 8.5: Tables and Graphs

Table 2.2A: Age-Related Sensory Changes and Outcomes

Age-Related Sensory Changes Outcomes

Vision 2. 1. Decline in light accommodation

response 3. 2. Diminished pupilary size 4. 3. Yellowing of the lens 7. 4. Atrophy of the ciliary muscles 8. (holding the lens) 9. 5. Development of cataracts

7. 1. Lessened acuity 8. 2. Decline in depth perception 9. 3. Diminished colour perception 10. 4. Increased sensitivity to glare 11. 12. 5. Decreased visual clarity

Hearing 2. 1. (i) Thinner, drier skin of external ear

(ii) thicker and longer hair in external ear canal (iii)narrowing of auditory opening (iv)increased cerumen

3. 2. (i) Ossilar calcification (ii)decreased blood cells to inner ear and auditory nerves

4. 3. Muscle, arterial blood vessels and spiral

ganglion degeneration

1.May result in difficulty hearing high-frequency sounds 2.May lead to gradual loss of sound 3.Degeneration may impair hearing ability

Smell and Taste

2. 1. Decreased olfactory cells

3. 2. Decrease in size and number of taste buds

2. 1.(i)Decreased appetite

(ii)decreased protection from harmful odours and unsafe food

3. 2. Could contribute to poor nutrition

(Adapted from van Hoof et al., 2010)

Table 2.3A: Behavioural and Psychological Symptoms of Dementia and Causes

Behavioural Symptoms Psychological Symptoms

Causes of BPSD

Wandering

Restlessness

Hyperactivity

Agitation

Aggression (verbal

and physical)

Appetite and eating

disorders

Socially

Irritability

Anxiety

Depression

Emotional lability

Apathy

Delusions and

misidentification

problems

(paranoia,

Psychological

co-morbidities

Unmet need or situation

Over and under-stimulation

Presence of pain

Overwhelming stressors or

event(s) made

unmanageable by cognitive

deficit

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unacceptable

behaviour

Disturbed sleeping

and waking cycle

suspicion,

abandonment,

betrayal)

Hallucinations

(visual, olfactory,

touch, auditory)

Lack of meaningful activity

Unsupportive environment

Social and cultural

differences between

individuals

(Adapted from Aberdeen et al., 2010; Elliot, 2010)

Table 2.4 A: Design Elements and Purpose in Supportive Living Environments for People with Dementia

Design Element Purpose

Structured, simple, and stable environment

Familiar and home-like

Support functional ability through meaningful activity

Use of familiar furnishings (such as artwork, furniture, memorabilia, pictures)

Use of warm, soft colours

Floor finishes and use of lighting

Defining spaces through use of colour and spatial contrast

Barrier-free, compensating environment; safety and security

Promote dignity and independent functioning

Serve as a cue to memory

Reduce agitation, confusion or other responsive behaviours

Maintain competence and self-esteem

Promote social interaction

Support wayfinding and orientation

Encourage eating, create home-like atmosphere

Non-glare finishes on floors and non-intrusive lighting will support vision sensitivities; decrease likelihood of falls

Support space orientation and purpose

Promote and preserve autonomy

(Adapted from van Hoof et al., 2010; Marquadt and Schmeig, 2009; Cioffi et al., 2007; Pynoos et al., 1989; Giltin et al., 2002; Davis et al., 2009)

2.5A Case Example: The Importance of Wayfinding and Environmental Cueing

Eva, a 64-year old woman, cares for her husband Ron, aged 65, who is diagnosed with probable Alzheimer’s Disease.

"He walks around for six times, before he finds the switch. I mean, I don't let him

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become tired from such things.[…] If I'd say, 'Please turn off the lights', then he has turned to four to five plug sockets, before he reaches the right light switch. Then I need to direct him:' There, forward, to the right'.[…] I want to let him do it by himself, but I really need to give him directions."

(adapted from J. van Hoof et.al 2010)

4.1A Case Study #1

At age 84, Roger lives with his daughter in an apartment and has been diagnosed with moderate dementia for one to three years. His daughter, Sue, assists her father with meal preparation and/or feeding; helping to locate commonly used items within their home; as well as helping her father manage his medications and appointments. Sue notices that her father has difficulty finding his way to the hallway outside his apartment, as well as his way around the kitchen. Roger has been rarely known to wander. Sue reports that her father very often experiences feelings of depression, frustration, confusion and anxiety. Sue has reported spending eleven hours or more per day assisting her father with dementia and is the primary caregiver.

4.1B Case Study #2

At age 88, Helen lives with her daughter’s family in a house and has been diagnosed with moderate Alzheimer’s disease for one to three years. Helen also has macular degeneration, making it difficult for her to see things clearly. Her daughter, Jane, assists her mother with some personal hygiene and dressing; helps her mother to locate commonly used items within their home; as well as assisting with meal preparation and/or feeding. Jane notices that her mother has difficulty finding items in the kitchen cupboards, as well as contents within Helen’s dresser drawers in her bedroom. Helen does not have difficulty finding her way around the house and has been rarely known to wander. Jane reports that her mother often experiences feelings of frustration, anger, confusion and anxiety. Her daughter and her family report spending four to six hours per day assisting their mother with Alzheimer’s disease.

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Pre- Study Questions: Q4: Does your family member have difficulty finding commonly used items around the home (for example: cups or bowls in kitchen cupboards, eating utensils, personal hygiene items, or clothing for dressing)? Q5: Does your family member have difficulty finding their way around the home (for example: finding the washroom, their bedroom, living room, or kitchen)? Q6A: How often does your family forget their purpose for entering a room and/or completing a task/activity? Q6B: Does your family member experience feelings of frustration, anger, confusion, anxiety when/if this forgetfulness occurs?

Pre-Study Questions Cont’d..: Q9: How often does your family member complete tasks/activities they originally set out to accomplish? Q10: Overall, what level of independence would you rate your family member with dementia?

4

3

4

5

4

1

3

4

0

1

2

3

4

5

6

Question #4 Question #5 Question #6A Question #6B

Sometimes

Table 4.1C: Pre- Study Questionnaire Results Questions #4 - #6B

Case Study #1

Case Study #2

Always

Frequently

Rarely

Not At All

3 3 3

2

0

1

2

3

4

5

Question #9 Question #10

Sometimes/Somewhat Independent

Table 4.1D: Pre-Study Questionaire Results Questions #9 and #10

Case Study #1

Case Study #2

Regularly/Very Independent

Rarely/Not Very Independent

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11

3

5

3

0

2

4

6

8

10

12

Before Templates After Templates

Nu

mb

er o

f H

ou

rs

Table 4.4A: Average Number of Hours Spent by Caregiver Assisting Family Member with Dementia

Case Study #1

Case Study #2

4

3

1 1

4

0

1

0 0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

Difficulty LocatingItems Before

Templates

Difficulty FindingWay BeforeTemplates

Difficulty LocatingItems AfterTemplates

Difficulty FindingWay AfterTemplates

Leve

l of

Dif

ficu

lty

Table 4.4B: Level of Difficulty Experience By Family Member with Dementia in Locating Items and Wayfinding Before and After Use

of Templates

Case Study #1

Case Study #2

70

5

1

4

2

0

1

2

3

4

5

6

Presence of Responsive BehavioursBefore Templates

Presence of Responsive BehavioursAfter Templates

Leve

l of

Occ

urr

ence

Table 4.4C: Presence of Responsive Behaviours in Family

Member with Dementia Before and After Templates

Case Study #1

Case Study #2

3

5

2

3

0

1

2

3

4

5

6

Level of Independence BeforeTemplates

Level of Independence AfterTemplates

High Level of Independence

Table 4.4D: Level of Independence of Family Member with Dementia Before and After Templates

Case Study #1

Case Study #2

Low Level of Independence

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Appendix 8.6: Examples of Products Used in This Study

1. 2.

3.

Figure 1: Sample of Templates on Cabinets (Sample Only)

Figure 2: Example of Directional Arrow*

Figure 3: Example of Kitchen Cupboard Templates*

*used with permission from study participants

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4A.

4B.

Figures 4A/4B: Pamphlet used in study for families to choose products from

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5.

6.

Figure 5: Template used on dresser drawer for extra sweaters, tailored to family member’s needs and abilities Figure 6: Template used on dresser drawer for nightgowns, tailored to family member’s needs and abilities

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Appendix 8.7: Examples of Questionnaires, Observation Journal and Other Materials Used For This Study

Pre-Study Questionnaire Study Number: ADF#5

Basic Information for Family Member with Dementia Age of family member with dementia: _______ Sex:

Male Female

Stage of Dementia:

Early Onset Moderate Severe

Type of Dementia (if known):

Alzheimer’s Disease Frontotemporal Dementia/ Pick’s Disease Vascular Dementia Creutzfeldt-Jakob Disease Lewy Body Dementia Parkinson’s Disease Down Syndrome Other: ___________________________ Don’t Know

Do you and your family member live in the Hamilton, Halton or Haldimand region?

Hamilton Halton Haldimand

16. When was your family member diagnosed with dementia? (Please circle)

Under 1 year 1-3 years 4-7 years 7-10 years More than 10 years

17. As a family member/informal caregiver, in what ways do you assist your family member

with dementia? (Please check all that apply)

Assist with personal hygiene

Assist with dressing

Assist with meal preparation and/or feeding

Assist with mobility

Assist with locating common items used in the home

Assist with finding certain rooms around the home

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Other (please specify): ___________________________________

18. As a family member/informal caregiver, how many hours per day do you spend assisting

your family member with dementia? (Please circle)

1-3 hours 4-6 hours 7-10 hours 11 hours or more

19. Does your family member have difficulty finding commonly used items around the home

(for example: cups or bowls in kitchen cupboards, eating utensils, personal hygiene

items, or clothing for dressing)? (Please circle)

1 2 3 4 5 Not at all Rarely Sometimes Frequently Always

20. Does your family member have difficulty finding their way around the home (for example:

finding the washroom, their bedroom, living room, or kitchen)? (Please circle)

1 2 3 4 5 Not at all Rarely Sometimes Frequently Always

21. A) How often does your family member forget their purpose for entering a room and/or

completing a task/activity? (Please circle)

1 2 3 4 5 Not at all Rarely Sometimes Frequently Always

B) Does your family member experience feelings of frustration, anger, confusion,

anxiety when/if this forgetfulness occurs? (Please circle)

1 2 3 4 5 Not at all Rarely Sometimes Often Very Often

22. Which areas of the home does your family member have difficulty finding their way to?

(Please check all that apply)

Bedroom

Washroom

Kitchen

Dining Room

Living/ Family Room

Laundry Room

Other (please specify):_______________________

23. Does your family member wander? (Please circle)

1 2 3 4 5

Rarely Not Often Sometimes Very Often Regularly

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24. How often does your family member complete tasks/activities they originally set out to

accomplish? (Please circle)

1 2 3 4 5

Rarely Not Often Sometimes Very Often Regularly

25. Overall, what level of independence would you rate your family member with dementia?

(Please circle)

1 2 3 4 5

Not Very Independent Somewhat Independent Very Independent

26. Other areas of concern/comments:

Thank you for taking the time to complete this questionnaire.

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Observation Journal Study Number: ADF#5

This purpose of this journal is to record observations of your family member with

dementia and their interactions with the cupboard door templates and signs

around the home.

This is to be completed for 5-7 consecutive days AFTER the templates have

been placed in your home.

Directions:

Please use one of these observation journal outlines to record your observations

and experiences of your family member with dementia and the use of the design

templates and signs that have been placed in your home. We have provided you

with a list of general questions or things to look for below. Please feel free to

write about any observations or experiences you wish to share. Your comments

and feedback will help us further improve our designs. We have provided you

with extra copies, should you require addition space for your comments.

Thank you for taking the time to complete your observation journal.

Day #: ______

What to Look For My Observations

How do the templates and signs help your family member with dementia? In which ways did they NOT help?

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What kind of changes in their behaviour or mood have you noticed?

Have you noticed your family member is able to locate objects and/or find their way around the house more easily? If so, what kind of changes have you noticed?

79

How have the templates and signs affected your family member’s independence?

Have you observed any frustrations related to the use of the temples?

80

Additional Comments/ Observations:

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Post-Study Questionnaire Study Number: ADF#5

27. With the use of templates in your home, in what ways do you assist your family member

with dementia? (Please check all that apply)

Assist with personal hygiene

Assist with dressing

Assist with meal preparation and/or feeding

Assist with mobility

Assist with locating common items used in the home

Assist with finding certain rooms around the home

Other (please specify): ___________________________________

None of these apply

28. With the templates in place, how many hours per day do you spend assisting your family

member with dementia? (Please circle)

1-3 hours 4-6 hours 7-10 hours 11 hours or more

29. With the templates in place, does your family member have difficulty finding commonly

used items around the home (for example: cups or bowls in kitchen cupboards, eating

utensils, personal hygiene items, or clothing for dressing)? (Please circle)

1 2 3 4 5 Not at all Rarely Sometimes Frequently Always

30. With the templates in place, does your family member still have difficulty finding their

way around the home (for example: finding the washroom, their bedroom, living room, or

kitchen)? (Please circle)

1 2 3 4 5 Not at all Rarely Sometimes Frequently Always

31. A) With the templates in place, how often does your family member forget their purpose

for entering a room and/or completing a task/activity? (Please circle)

1 2 3 4 5 Not at all Rarely Sometimes Frequently Always

B) With the templates in place, does your family member experience feelings of

frustration, anger, confusion, anxiety when/if this forgetfulness occurs?

1 2 3 4 5 Not at all Rarely Sometimes Often Very Often

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C) Which feelings or behaviours do you feel have changed and what are the feeling or

behaviours like now?

32. With the templates in place, which areas of the home does your family member have

difficulty finding their way to? (Please check all that apply)

Bedroom

Washroom

Kitchen

Dining Room

Living/ Family Room

Laundry Room

Other (please specify):_______________________

33. With the use of templates in your kitchen, have you noticed an increase in food intake of

your family member with dementia?

Yes

No

34. With the use of templates, how often does your family member complete tasks/activities

they originally set out to accomplish? (Please circle)

1 2 3 4 5 Rarely Not Often Sometimes Very Often Regularly

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35. With the use of templates in your home, what level of independence would you rate your

family member with dementia now? (Please circle)

1 2 3 4 5

Not Independent Somewhat Independent Very Independent

36. How useful were the template designs and signage in supporting your family member

with dementia in the home?

1 2 3 4 5

Not Very Useful Somewhat Useful Very Useful

37. We appreciate your comments and feedback on how we can improve our templates and

signs to better support the needs of your family member with dementia.

What worked well?

How can we improve?

38. Do you think there is anything we forgot to include or address in this study?

39. Did we pick the right templates for your loved one with dementia? If yes, what worked, did not work and why? If no, what should we have done?

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40. What was your experience from this study? What did you learn?

41. From your experience, how could this help others?

42. General Comments:

Thank you for taking the time to complete this questionnaire.

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