Caring for people with dementia - An art-based approach
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Caringforpeoplewithdementia:Anart‐basedapproach
ShamaChaudhary
4thyearMedicalStudent
TheUniversityofManchester
1
Abstract
Dementia poses a huge and ever increasing disease burden to societies worldwide.
(1) It has been described as an epidemic and the problem is only likely to escalate
with an ageing global population.
This reports aims to explore ways to optimise dementia care and focuses on person-
centred methods including art based interventions. There is increasing evidence
base for use of psychosocial interventions in management of dementia. (2) It will
also look at the current art-based intervention in practice in South Australia and their
impact.
Dementia, a history
The word Dementia is derived from Latin de (out of), mens (mind) and ia (state). The
word dementia has historically been used to describe a mental derangement of
several types regardless of the age of the patient. The first association between
dementia and ageing on record was made by Aretaeusn of Cappadocia in second
century. He attributed dementia to normal mechanisms of ageing. The distinction
between normal ageing of the brain and late life neuro-pathologies was not quite
established until a breakthrough in understanding dementia came with English
physician Dr James Pichard proposing in 1837 that dementia was not part of the
normal ageing. Our understanding of dementia has come a long way since but there
are still many unanswered questions. (3)
Current understanding and classification of dementia
2
Dementia can be defined as “an acquired global impairment of intellect, reason and
personality without impairment of consciousness.”(4) Memory dysfunction and
emotional lability are usually prominent features.
Dementia is an umbrella term encompassing many heterogeneous syndromes.
There is an absence of consensus on a unifying mechanism for these conditions.(5)
A generally acceptable way of classifying dementia is based on whether it is
neurodegenerative or not. Most common causes of dementia are neurodegenerative
and include Alzheimer’s disease, dementia with Lewy bodies, frontotemporal
dementias, Parkinson’s disease dementia and Huntington’s disease. Non
neurodegenerative causes of dementia are given in the table below
Causes Examples
Cerebrovascular multi-infarct dementia, Binswanger's
disease
Drugs and toxins barbiturates, anticholinergic agents,
digoxin, alcohol, heavy metals
Infections Creutzfeldt-Jakob disease, HIV infection,
neurosyphilis
Metabolic disorders uraemia, hepatic failure, hypothyroidism,
hypoparathyroidism
Vitamin Deficiencies B1-Wernicke-Korsakoff syndrome, B2, B12
Intracranial space-occupying lesions neoplasms, chronic subdural haematoma
Paraneoplastic syndromes limbic encephalitis
Hydrocephalous
3
Alzheimer’s disease is the by far the most common cause of dementia in the
developed world followed by dementia with Lewy bodies, Vascular dementias and
frontotemporal dementias.
Dementia and society
Dementia has always been a significant social issue due to its behavioural and
cognitive manifestations. Mental disorders were recognised as illness in the western
world in fifteenth and sixteenth centuries. Before that people with dementia either
lived in alms houses or on streets when their families could no longer care for them.
From eighteenth century onwards, they were cared for by psychiatric hospitals. The
proportion of people with dementia in these establishments has continued to
increase ever since due to an ageing population as well as due to improved
diagnostic tools and general awareness. However, a significant proportion of people
with dementia are still looked after by their families.
Impact of dementia
Dementia has enormous impact on the person and people around them. Increasing
level of care is required which, when combined with the emotional aspect of the
disease can be devastating for loved ones and can lead to impaired state of
wellbeing not just for the patients but for their carers too. The factors important in
determining the impact of dementia include severity of disease, rate of progression,
the nature of relationship in pre morbid person with dementia and their carers as well
as availability of social, medical and financial support.
Dementia impacts every aspect of a person's life. It deprives them of their autonomy
so that they can't live independently or make judgements. Activities and hobbies that
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they used to enjoy may not be possible due to a decline in memory and cognition.
The impact of dementia may cause further psychiatric problems such as depression
and psychosis. In later stages of the disease the motor system is often affected and
speech may be impaired or essentially ineffective rendering them unable to
communicate their wishes. All of the above have a significant bearing on the quality
of life of the person with dementia. Quality of life (henceforth referred to as QoL) is
defined by WHO in terms of physical and psychological wellbeing, level of
independence, social relationships, environments and spirituality, religion and
personal beliefs. Health related QoL (HRQoL) aims to measure the impact of a
disease on a person's QoL. HRQoL is at least partly subjective and can be
challenging to measure in people with dementia due to several factors including
impaired memory of experiences, language problems and lack of insight. For those
reasons, QoL for people with dementia is mainly measured by objective measures
such as degree of impairment, social interactions and quality of their surrounding
environment and care. Quality of care that people receive due to their dementia is
very important determinant of QoL due to obvious reasons; however, it has been
shown that some people with dementia were likely to be treated differently from
general population even for issues unrelated to dementia. Nygaard and Jarland
(2005) found that people with dementia in a care home were less likely to be given
pain relief than people who did not suffer from dementia. Another retrospective, post
mortem study in a hospital found that fewer medical interventions were attempted in
people who had dementia compared to those who did not have dementia. Other
issues associated with quality of care for dementia include the potential for abuse,
neglect and other harmful behaviours due to vulnerability of the person with
dementia.
5
The other important impact to consider is the impact on the caregiver. Due to the
nature of dementia and typical absence of insight on the patient's part, much of the
burden of the disease in dementia is shouldered by their carers. (6)
Family carers are usually spouses or adult children with no previous experience or
training. Caring for people with dementia requires very high investment of time,
money and emotions and often prevents carers from pursuing their own ambitions
and hobbies in life. This combined with ever increasing demands of care can be very
emotionally and physically draining.
Carers have been found to score much below the normal average on HRQoL scores.
(7) There is also evidence of higher than normal morbidity and mortality in
caregivers. (8)
Use of art based interventions in management of dementia
The use of art based interventions to improve quality of life and function in people
with dementia is a field of growing interest. There is evidence to support that
frequent participation in creative activities can abate cognitive decline(9) and reduce
the risk of developing dementia.(10)
Traditionally, modes of these interventions have included drawing, painting, singing,
poetry and music and there are demonstrable benefits of using all of those(11)(12).
There are also some programmes being developed aiming to deliver the above
interventions through new technology e.g. Tablets(13), however, the efficacy of
these remains to be seen.
The rationale for using these mainly sensory interventions is that the sensory
memory is preserved in dementia till late stages. George Sperling’s work on sensory
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memory (14) demonstrated that it is a fast-decaying type of memory that is
independent of short term and long term memory types, however, it is strongly
associated with recall. For example a certain sight or smell can bring long-term
memories flooding back. These characteristics make it ideal for exploitation in
dealing with dementia memory loss. Not only does the patient get to enjoy a part of
their memory function that is preserved but it also helps improve the functions that
are compromised.
The long term memory type is usually most affected in dementia. A widely used
classification of long term memory is that by Anderson (15) who divided it into
declarative and procedural type.
The declarative or explicit memory requires conscious recall of information and
includes semantic memory i-e facts without context and episodic memory i-e facts
within time-and-place context.
The procedural or implicit memory on the other hand concerns information that does
not require conscious recall and includes skills such as riding a bike. Fortunately, this
type of memory is also preserved in dementia. This means that people with dementia
are able to enjoy activities such gardening, knitting and reading a book till late stages
of the disease.
My time at Alzheimer’s Australia in Adelaide
Recently, I had the chance to spend time with an organisation called Alzheimer’s
Australia at their South Australia branch in Adelaide. My main interest was to learn
about their art-based interventions in management of dementia. During the course of
this placement, I had the opportunity to learn about and observe a technique called
7
Montessori Method being used in order to improve quality of life and health
outcomes in patients with dementia.
Background of Montessori Technique
Dr Maria Montessori (1870-1952) was one of the first female physicians in Italy. Her
special interests were paediatrics and rehabilitation. During her internship in a
psychiatric clinic in Rome, she was assigned a group of children considered mentally
deficient and “unteachable”. She recognised that these children responded
favourably when they found an activity interesting in a supportive rather than
corrective environment. She devised a very successful methodology to teach these
children now known as the Montessori Method. It includes an education tailored to
an individual’s level of functioning and pace, an active role for everyone in the
classroom, “fail-safe” activities which contribute to the child’s sense of self-worth and
a variety in the ways of learning. Montessori philosophy and mission was to enable
individuals to be as independent as possible, to have a meaningful place in their
community, to possess high self-esteem and finally to have a chance to make
meaningful contributions to their community
Dr Cameron Camp (Director of research and development at Centre for Applied
Research in Dementia) recognised the potential for Montessori technique to be
adapted for dementia and has done extensive research in this field.
Along with devising many other activities, he also conceived specially adapted books
for people with dementia to bank on the fact that most of them still have their
procedural memory intact and can read and enjoy a good book.
8
These books have larger font with writing on one side of the page. They also ensure
that the sentences don’t run over to the next page. All this helps to combat the
confusion and minimises distraction to make reading more enjoyable. They are also
designed to be read in groups to add the social incentive to reading a book. An
example of such book is given below.
Montessori as adapted to Dementia care
In terms of dementia, Montessori technique focuses on the human need for sensory
and cognitive stimulation. Activities are designed to be engaging, provide stimulation
for the senses and promote a sense of independence and achievement in the
individual. The level of difficulty is adapted to individual’s capabilities. There is an
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emphasis on "doing" as it helps the individual exercise control over their
environment. These activities have shown to decrease agitation and increase
engagement in people with dementia.(16,17)
A Montessori based care would start with an individual’s needs assessment. This is
done on a basic level with Maslow’s hierarchy of needs i-e physical needs (I-e pain,
hunger, physical, discomfort) must be dealt with before higher needs (the need for
intellectual stimulation, love, and self-esteem) are tended to.
The next step is assessing what the individual’s physical and mental capabilities are.
This includes taking into account any comorbidities such as arthritis as well as the
level of their cognitive decline.
With the above limitations in mind, the activities are tailored to individual’s past
profession and interests. For example, for someone who was a tailor, a fabric based
activity might be suitable. There are 4 types of activities used in Montessori Method:
activities of daily living, sensory, cognitive, and roles and routines. An activity may
incorporate one or more of these components. The aim is to encourage maximum
mental and physical mobility.
In addition to activities, environment plays a key role in maximising the physical and
social wellbeing of a person with dementia. It is important that the environment
provides intrigue and there are things to do at hand e.g. having reminiscing photo
books on tables. It is equally important that environment is familiar to them. This
might be achieved in residential care by personalising their rooms with their
belonging e.g. pictures, paintings and pieces of furniture from their home. Having the
room set up the same way they had at home might also be helpful. It is always
recommended to have lots of reassuring environmental cues to combat some of the
10
confusion and fear that dementia brings along. It might also help to have the
answers to their most frequent questions printed and displayed within their line of
vision.
The people in regular contact with a person with dementia e.g. family and carers
need to be mindful that verbal communication might not be possible in some cases
but that need not limit their social interaction with them. There are ways to engage
with them other than verbal communication e.g. offering to make their hair for them
or doing an activity together. Montessori activities should always be explained by
demonstration rather than verbal directions. “Validation” can be used to interact with
people with dementia to build a rapport and open a channel of communication. It
involves validating their concerns and fears. For example if a person with dementia
tells carer “I am waiting for my husband to come home before I have dinner.” It might
be useful to ask them a question about their husband rather than reminding them
that their husband had passed away a long time ago.
Application of Montessori Technique in residential care settings:
I had an opportunity to spend a day at two residential care units in North Eastern
Community Hospital in Adelaide where Montessori based activities are used for
residents by “life-style and leisure co-ordinators”.
The residents are invited to part-take in these activities from 10.30 till noon and 1.30
till 4pm every day. Activities include flower arranging, folding clothes, finding shells in
sand and matching and sorting objects based on colour and shapes.
11
A sorting activity based on
shapes. It aims to focus on
hand-eye co-ordination, as
well as repetitive
movement to preserve
function.
It was great to see people engaged in these activities. It was easy to see that they
were enjoying them. I found a lady, Brenda (not her real name) looking for sea shells
in the sand. “I loved going to the beach when I was little” she told me “My sister and I
would gather lots of seashells and play with them.” After having found all the shells,
she went on arrange them into a pattern.
12
On another table, a gentleman was busy slotting blocks in relevant shapes. The task
was made difficult due to severe arthritis in his hands. However, he was very
focused and determinedly continued with the painstaking fine movements while his
lunch waited near him.
Other people around the room chose from activities such as reading, reminiscing
photo books, flower arranging and handling babushkas dolls. One of the ladies
occupied herself with ironing and putting clothes on a line.
13
I left the hospital with an impression that these activities provide the residents with
much needed stimulation and sense of accomplishment as well as keeping them
14
physically and mentally active. It allows them to enjoy the present moment while
doing something meaningful with their time.
Apart from the obvious holistic benefit, there is some evidence (16) that these
interventions result in reduction in “responsive behaviours” in people with dementia.
Behaviours such as wandering, general restlessness, agitation, grabbing on people,
pacing, repetitive questioning and requests for help, trying to get to a different place
(exit seeking) and verbal issues ( e.g. screaming and swearing) are referred to as
responsive behaviours as they are thought to be caused by unmet needs coupled
with memory loss. Montessori postulated that “boredom and restlessness are
integrally related to problem behaviours”
Case Study
I met up with Thelma, an 87 year old lady with dementia at her house. She lives with
her daughter Cheryl and son-in-law and has lived with them for past three decades.
Thelma was diagnosed with dementia in 2009 which has been confirmed to be the
Lewy body type recently. Cheryl, who is a carer for her mother tried daily Montessori
activities with her a year ago and they were both very happy with the outcome.
Talking about her experience, Thelma recalls “Montessori activities pulled out of a
black hole I was in.” Cheryl feels that they have been a great use to her as a carer
too “I can gauge how mum is doing based on these activities on a daily basis”
Thelma had a baseline score of 16 on the Mini Mental State Exam (MMSE),
however, after 6 months of daily Montessori activities, her score went up to 24.
MMSE is a diagnostic scale used to help with the diagnoses of Dementia and is
scored out of 30. A score of below 23 is usually closely co-related to dementia.
15
Thelma and Cheryl still do these activities on a regular basis and were kind enough
to let me observe one of these sessions.
1VegetableBingo
16
Matching pictures to words
2
Reading together
Other art based interventions:
It can be argued that human beings are inherently creative. Regardless of any
background in art, we are all intrigued by colours, shapes and interfaces as well as
sounds. The processes of both learning and creation are associated with a sense of
reward, self-accomplishment and purpose in life. All this makes art based
interventions very favourable for people with dementia.
“Alzheimer’s Australia” run a programme called “give it a go” for people with
dementia and their carers. It provides them with a platform to meet up and
participate in various activities such as painting, poetry, tai chi, and dance etc.
17
One of the other interventions used is “Child representational therapy” It is defined
as “A validation/reminiscence and diversional intervention that provides people with
dementia an opportunity to interact with a ‘life-like’ baby doll in a manner that is
therapeutic to them. “
A life-like baby doll
The therapeutic value comes from the emotional expression to or about the baby
doll, a sense of purpose and comfort in looking after and holding the “baby” (Some
may perceive it as a real baby, others may not) and reminiscence about personal
child rearing experience.
The child representational therapy may be of use to people with who have social
withdrawal or “responsive” behaviour. It may work better with people who liked being
around children or had children themselves. It is also shown to have better
therapeutic value whereas the person with dementia perceives the doll to be a real
baby. In such cases, it is crucial for carers to mirror their behaviour and treat the
baby as they would a real baby.
18
It is very important to inform family and significant others about the therapy in detail
and gain their consent as some people may find it patronising and condescending for
dolls to be used for adults.
Conclusion
It has become clear in recent years that for optimum outcomes for a patient with
dementia, the care system would have to be focused on preserving a person’s
identity and “person-hood” (18)
Montessori and other art-based interventions tend to focus on the person within the
patient and provide people with a meaningful way of spending their time, doing
something they enjoy while at the same time preserving social, cognitive and
physical function.
There are lessons to be learned from this successful use of art for positive medical
outcomes and there is room for exploration of application of these techniques in
other areas of medicine too.
Thanks to international collaboration, some of the Montessori methods used by
Alzheimer Australia are now being adapted by Manchester Art Gallery and
Manchester Museum.
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References
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