Telecare and Dementia
Professor Jane Gilliard, Department of Health
Based on a presentation (658 kb) ![[ppt]](http://hubola.kingsfund.org.uk/display_images/document_icons/ppt.gif){kind=icon}
delivered at the 11 February 2010 WSDAN Roadshow
People with dementia
It is estimated that around 700,000 people in the UK (570,000 in England) have dementia. These numbers are likely to double – and the costs of dementia care are likely to triple – because of the ageing population and demographic factors. Two-thirds of people with dementia are never diagnosed.
A National Audit Office (NAO) report from 2007 found that people with dementia are often excluded from services, and their needs are misunderstood or ignored. Although there are examples of creative practice, there is a long way to go to improve care for people with dementia.
The National Dementia Strategy
Living well with dementia: A National Dementia Strategy was published in February 2009. Its vision is that people with dementia and their carers will be enabled to live well with dementia. As well as older people, there are significant numbers of under 65s and people with learning disabilities who live with dementia. The national strategy covers a wide range of care settings (including the home, hospital, care home and prison) and the whole journey of dementia (from before diagnosis to assessment, early support, living well, through to end-of-life care). The strategy also covers carers of people with dementia.
Telecare and the National Dementia Strategy
Objective 10 of the strategy refers to telecare as well as housing support and housing-related services. The strategy calls for an improved evidence base. It is important to recognise that the needs of people with dementia will change over time. We do have some evidence that technology can support people with dementia, particularly if the interaction is passive (ie, if people do not have to do anything and it is there in the background as a form of support). We also have evidence that people with dementia do really well if we make the technology that is already there simpler to use (eg, a limited number of useful buttons on a TV remote control unit).
Bridging the Gap
The broader evidence that commissioners need to inform local dementia care programmes is not as readily available as the individual case study examples. The Whole System Demonstrator sites will hopefully provide more evidence about the costs, benefits and efficiencies of caring for people with dementia.
The national strategy is open-ended in what it says about technology. It is necessary to keep in touch with the emerging evidence base. In discussions with people working in dementia during 2009, some gaps were identified, including gaps in knowledge and gaps in the evidence. In January 2010, an event called ‘Bridging the Gap’ was organised and a report will be available soon.
Discussions at this event highlighted the need to:
- involve people with dementia and their carers in research and commissioning
- develop an evidence base that informs commissioning intentions
- disseminate what we already know.
One of the key emerging features was the importance of leadership – telecare was most successful where there was somebody who understood the role that it could play in supporting people with dementia, and where there was somebody who was prepared to champion it.
Another important point was that something about the term ‘telecare’ seems to put people off (eg, people at an early stage of dementia may not have identified themselves as needing care). An expression like ‘remote support’ may fit the bill better than ‘telecare’.
There was a lot of discussion about the importance of response systems; it is fine to have the technology installed in someone’s home but there have to be response arrangements for this to work. In Wiltshire, for instance, a response system had been set up with the out-of-hours GP system at a lower cost.
Perhaps one of the biggest challenges for telecare is persuading local councils and board members that it is worth doing and investing in. There is still much to do in terms of making evidence and information about telecare more easily accessible.
Telecare and other objectives of the dementia strategy
It was also important to recognise that telecare spans a number of the other objectives in the national strategy, including:
- Objective 1: Ensure that the message about telecare is integrated into public awareness campaigns run by the Department of Health.
- Objective 3: Continue provision of good-quality information about assessments for telecare and assistive technology (AT) products (eg, the ATdementia website (www.atdementia.org.uk/) and DH Care Networks ‘Telecare and dementia A to Z’ (www.dhcarenetworks.org.uk/_library/Resources/Telecare/Support_materials/DH_Care_Networks_-_Telecare_and_Dementia_-_Sept_2009.pdf)
- Objective 4: Ensure that the new Dementia Adviser pilots are informed of local assistive technology/telecare resources and services to pass on to service users.
- Objective 8: General hospitals – potential for assistive technologies is under-explored.
- Objective 11: Care homes – potential for assistive technologies/telecare still has to be realised.
- Objective13: Workforce recommendation: staff need to be trained and updated in assessments for telecare and product availability.
Objective 10 does not address telehealth, and this has not really been explored in the area of dementia care. The WSD programme may be able to provide some understanding of the role that telecare and telehealth can play in supporting people with other long-term conditions as well as dementia.
To conclude, if we can get it right for people with dementia, we are well on the way to getting it right for everybody.
Jane Gilliard and Claire Goodchild from the Department of Health team can be contacted at:
Claire.Goodchild@dh.gsi.gov.uk
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