Improving the experience of dementia and enhancing active life - living well with dementia: study protocol for the IDEAL study

Abstract

BackgroundEnabling people with dementia and carers to ‘live well’ with the condition is a key United Kingdom policy objective. The aim of this project is to identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia, and to understand what ‘living well’ means from the perspective of people with dementia and carers.Methods/DesignOver a two-year period, 1500 people with early-stage dementia throughout Great Britain will be recruited to the study, together with a carer wherever possible. All the participants will be visited at home initially and again 12 months and 24 months later. This will provide information about the way in which well-being, life satisfaction and quality of life are affected by social capitals, assets and resources, the challenges posed by dementia, and the ways in which people adjust to and cope with these challenges. A smaller group will be interviewed in more depth.DiscussionThe findings will lead to recommendations about what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia.

The relationship between perceived functional difficulties and the ability to live well with mild‐to‐moderate dementia: Findings from the IDEAL programme

“…This study extends previous research, which has primarily focussed only on the association between functional ability and QoL 25,40. This study extends previous research, which has primarily focussed only on the association between functional ability and QoL 25,40.…”

“…19 Living well in people living with chronic illness and disability is defined as the best achievable health state that encompasses all dimensions of physical, mental, and social well-being. 22,25,26 Understanding the relationship between functional ability and subjective perceptions of living well is important, particularly as no preventive or curative treatment for dementia is currently available. 24 Integration of these three concepts captures a more complete understanding of what it is to live well with a particular condition.…”

“…25 • Even subtle difficulties in activities of daily living have a detrimental effect on the ability of people with dementia to live well. 25 • Even subtle difficulties in activities of daily living have a detrimental effect on the ability of people with dementia to live well.…”

“…on the Mini-Mental State Examination, 48 indicating mild-to-moderate dementia, and the ability to communicate verbally in English. 25 To measure instrumental ADL, we employed an 11-item FAQ, modified from the original 10 items to include a question concerning telephone use. Informants were recruited into the study if they were willing to take part and were proving regular care to the person with dementia.…”

Behavioural activation written self-help to improve mood, wellbeing and quality of life in people with dementia supported by informal carers (PROMOTE): a study protocol for a single-arm feasibility study

“…Current estimates indicate that on a global scale, prevalence stands at 35.6 million with 670,000 living with dementia in the United Kingdom (UK) [4]. The provision of long-term support to help people with dementia ‘live well’ is, therefore, a global health and social care priority [5–7]. …”