What do people really want? meeting the needs of people with dementia and their carers

through technology

Gail Mountain

Director K-T EQUAL

g.a.mountain@sheffield.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

Commercially available safety devices – fire alarm/ carbon monoxide alertCommercially available reminder systemsLost item locatorVideo phoneSmart phone technologyCombined mobile phone/ GPS technologyDoor alarm

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 systemsInternet social networking computer WebcamCombined mobile phone/ GPS technology

Technology across the whole dementia journey

• Early stages: to maintain cognition, orientation and safety, obtain support and for enjoyment

• Middle stages: To compensate for deficits and alert carers, obtain support and for enjoyment

• Later stages: for safety and for enjoyment

Examples of technologies developed to meet the needs of people with dementia

Needs that the device is intended for

Stage of dementia Project title/ description

Reference to work Stage of develop-ment

Prompting ADL sequencing

Moderate/late

Coach device to monitor /prompt handwashing

Mihailidis et al, 2007

Prototype

Safe use of domestic equipment

Moderate Prompting when using the cooker

Wherton and Monk, 2009

Prototype

Following recipes

Early/ moderate Sequencing and prompting

Pigot et al, Sherbrooke University Canada

Prototype

Orientation at night/ prompting

All Nocturnal; Wang et al, 2010 Prototype

More examples Needs that the device is intended for

Stage of dementia Project title/ description

Reference to work Stage of develop-ment

Orientation and targeted prompting

Moderate SMART home technology to provide prompts

Evans et al, 2007; Orpwood et al, 2007

Prototype

Mobile Day Navigator

Early mobile technology to prompt activities, maintain social contacts and safety

Mulvenna and Nugent, 2010

Prototype

Reminiscence,

conversation and

pleasure

All CIRCA (Computer

Interactive

Reminiscence and

Conversation Aid)

Astell et al, 2009a;

2010 

Ready for

commercialisation

Meaningful and engaging activity; autonomy, competence and control

All Living in the Moment – games and activities for people with dementia

Astell et al, 2009; 2010

Ready for commercialisation

Living well with dementia

Technology for enjoyment: a new area

Recall and reminiscence e.g. digital story telling

Socialisation e.g. social networking

Comfort e.g. robotic pets

Use of existing technologies; for example digital scrapbooking

I have just recently bought a computer program which will allow me to do digital scrapbooking.  This is a wonderful invention for people such as myself who have a short term memory problem.  It is easy to use.

It is allowing me to go back to the myriad of pictures I have collected and stored on CDs to select the best for my "albums".  Currently I am working on my Alaska album. 

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

More messages

• Technologies are dependent upon associated interventions

• Better design facilitates use

• Requires creativity and openness to learn from people with dementia

• Don’t focus purely on self-care and safety. It’s important to have fun too!!

19

KT-EQUAL – a resource to assist with collaboration and

idea generation

• Collaboration across 7 universities• Commenced in January 2009 and substantively in

October for four years• Led by an interdisciplinary group of research leaders• Recruited staff include research coordinators, a press

officer and a lobbyist

• Get involved by registering at www.equal.ac.uk