What do people really want? meeting the needs of people with early dementia

and their carers through technology Gail Mountain

Professor of Health Services Research Co-Director KT-EQUALUniversity of Sheffield

g.a.mountain@sheffield.ac.uk

Claire CraigSheffield Hallam University

c.craig@shu.ac.uk

Policy views of the contribution of technologies

A new healthcare delivery model based in preventative and person-centred health care systems. This new model can only be achieved by use of ICT, in combination with appropriate organisational changes and skills (EU Commission, Transformng the EU healthcare landscape towards a strategy for ICT for health, 2006)

Person centred, responsive, adaptable services supported by new opportunities presented by electronic assistive technologies (Our Health, Our Care, Our Say DoH, 2006)

Listen to the Voices of People with Dementia

“I'm not dying of dementia. I'm living with dementia.”

“I want to keep going for as long as I can and when things are difficult I don't want to be left on the shelf or forgotten.”

The differing perspectives of people with dementia and carers

The caregivers have a tendency to emphasise care issues such as management of ADL and IADL and safety....people with dementia report how difficult it is to find something to do, sleep or live with the insecurity that you do not know where you are and what time of day it is. Only a few studies were interested in the experiences of people with dementia.

Topo, P (2007) Technology studies to meet the needs of people with dementia and their caregivers: a literature review. Journal of Applied Gerontology, 28(17).

Understanding the potential of self management for dementia

• In the early stages of the illness following diagnosis

Mountain (2006), Dementia, The International Journal

• Involving both the person with dementia and their carer

• Gail Mountain and Claire Craig have been working with people with dementia to determine the content of a self management programme “Journeying Through Dementia”

What the consultation involved

• Individual interviews with people with early stage dementia and with their carers – interview format decided by the person with dementia (10 interviews conducted)

• A consultation group with people with dementia and their carers over six successive weeks (15 participants)

Twelve self management dimensions were identified

Dimension What it involves

Understanding dementia Full and timely information about the condition and what to expect

Rethinking dementia Dementia as part of a process of change, health, wellbeing and activity, enabling environments

Living with dementia Making the most of routines, memory maintenance

Relationships Building and maintaining friendships, husbands, wives and partners: rediscovering relationships

Keeping mentally well Recognising and overcoming depression, managing anger, managing anxiety

Experiencing well-being Volunteering, hobbies, leisure

Dementia and daily living Using everyday technology, managing finances, home and community safety

More dimensionsDimension What it involves

Keeping physically well Eating and nutrition, sensory impairment, developing healthy bladder and bowel habits, managing medication, sleep, managing fatigue

Building and developing skills Obtaining support to learn new things e.g. using technologies such as computers and mobile telephones.

Keeping connected Maintaining community connectedness, accessing outside opportunities, transport and driving

Maintaining a sense of self Dressing and identity, self-esteem, spirituality, keeping faith

Planning for the future Looking towards and planning for the future

The consultation also offered new insights such as ....

• The feelings that can be triggered through the focus upon carer needs;

• Problem behaviours that tend not to be discussed;

• Managing dementia alongside other conditions

How might technology be used to assist with self management (1)

Self management dimension

What it involves Technology – some ideas

Dementia and daily living

(1) In-home instrumental activities of daily living (IADL); cooking, cleaning, gardening, using phone; home security (2) Community based IADL; using transport, shopping, managing finances (3) Home and community safety (4) Preventing accidents and falls

Safety devicesReminder systemsLost item locatorVideo phoneAdapted phones Combined mobile phone/ GPS technology Home based and mobile reminder systems

How might technology be used to assist with self management (2)

Self management dimension

What it involves Technology – some ideas

Keeping connected

(1) Maintaining community connectedness (2) Accessing outside opportunities (3) Using transport

Video phoneReminder systemsSocial networkingWebcam Combined mobile phone/ GPS technology

The main messages• The needs of each person with dementia and

each carer will be different and will change over time

• The person with dementia will have different aspirations and goals to those of their carer

• There will always be underlying complexity

• The abilities of the person with dementia should be nurtured for as long as possible