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

Clare L, Nelis SM, Quinn C, Martyr A, Henderson C, Hindle JV, Jones IR, Jones RW, Knapp M, Kopelman MD, Morris RG, Pickett JA, Rusted JM, Savitch NM, Thom JM, Victor CR - Health Qual Life Outcomes (2014)

Bottom Line: All the participants will be visited at home initially and again 12 months and 24 months later.A smaller group will be interviewed in more depth.The 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.

View Article: PubMed Central - PubMed

Affiliation: Research in Ageing and Cognitive Health, School of Psychology, Bangor University, Bangor, UK. l.clare@bangor.ac.uk.

ABSTRACT

Background: Enabling 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/design: Over 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.

Discussion: The 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.

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Related in: MedlinePlus

Overview of factors thought to affect the ability to live well with dementia that will be examined in IDEAL.
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Fig1: Overview of factors thought to affect the ability to live well with dementia that will be examined in IDEAL.

Mentions: Our investigation will be conducted in relation to a model that identifies the following key elements: capitals, assets and resources, challenges, adaptation, and ability to live well. This model acknowledges the centrality of subjective evaluations in determining whether a person is ‘living well’ [9]. Capitals, assets and resources crucially shape the pathway through the experience of dementia, whether directly affecting symptoms and progression for the people with dementia, or affecting the potential for adaptation for the people with dementia and carers, or both. They can influence the effects of pathology, mitigate the extent of any resulting disability, prevent excess disability and reduce the risk of social exclusion [10]. They include social (e.g. social networks, social contacts, interpersonal relationships, availability of help and support), environmental (e.g. neighbourhood), financial (e.g. income), physical (e.g. physical function and fitness), and psychological (e.g. self-esteem, optimism) aspects, as well as access to social and health care. The operation of these capitals, assets and resources can be affected by the presence and severity of dementia-related and other challenges and by the degree of adaptation achieved. Adaptation is the potential to be able to adapt and to manage and cope with the challenges dementia brings, including the symptoms themselves and their impact and implications, as well as any other challenges encountered (e.g. dependence, other health problems, frailty, sensory impairments, depression, carer stress). It is central to the possibility of living well and maintaining QoL [11-13], as indicated by models of ‘successful’ ageing in the face of physical illness, frailty or disability [11]. Adaptation encompasses both practical and social changes, such as modifying activities, modifying the environment, or mobilising additional support [11], and psychological changes, such as altering expectations and revising goals [12]. The outcomes of the complex interactions between capitals, assets and resources, challenges and adaptation are reflected in the social participation, expression of positive emotions, and subjective evaluations of well-being, life satisfaction, and QoL, that together index the extent to which the person is living well with dementia. This model is summarised, in simplified form, in Figure 1.Figure 1


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

Clare L, Nelis SM, Quinn C, Martyr A, Henderson C, Hindle JV, Jones IR, Jones RW, Knapp M, Kopelman MD, Morris RG, Pickett JA, Rusted JM, Savitch NM, Thom JM, Victor CR - Health Qual Life Outcomes (2014)

Overview of factors thought to affect the ability to live well with dementia that will be examined in IDEAL.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4260182&req=5

Fig1: Overview of factors thought to affect the ability to live well with dementia that will be examined in IDEAL.
Mentions: Our investigation will be conducted in relation to a model that identifies the following key elements: capitals, assets and resources, challenges, adaptation, and ability to live well. This model acknowledges the centrality of subjective evaluations in determining whether a person is ‘living well’ [9]. Capitals, assets and resources crucially shape the pathway through the experience of dementia, whether directly affecting symptoms and progression for the people with dementia, or affecting the potential for adaptation for the people with dementia and carers, or both. They can influence the effects of pathology, mitigate the extent of any resulting disability, prevent excess disability and reduce the risk of social exclusion [10]. They include social (e.g. social networks, social contacts, interpersonal relationships, availability of help and support), environmental (e.g. neighbourhood), financial (e.g. income), physical (e.g. physical function and fitness), and psychological (e.g. self-esteem, optimism) aspects, as well as access to social and health care. The operation of these capitals, assets and resources can be affected by the presence and severity of dementia-related and other challenges and by the degree of adaptation achieved. Adaptation is the potential to be able to adapt and to manage and cope with the challenges dementia brings, including the symptoms themselves and their impact and implications, as well as any other challenges encountered (e.g. dependence, other health problems, frailty, sensory impairments, depression, carer stress). It is central to the possibility of living well and maintaining QoL [11-13], as indicated by models of ‘successful’ ageing in the face of physical illness, frailty or disability [11]. Adaptation encompasses both practical and social changes, such as modifying activities, modifying the environment, or mobilising additional support [11], and psychological changes, such as altering expectations and revising goals [12]. The outcomes of the complex interactions between capitals, assets and resources, challenges and adaptation are reflected in the social participation, expression of positive emotions, and subjective evaluations of well-being, life satisfaction, and QoL, that together index the extent to which the person is living well with dementia. This model is summarised, in simplified form, in Figure 1.Figure 1

Bottom Line: All the participants will be visited at home initially and again 12 months and 24 months later.A smaller group will be interviewed in more depth.The 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.

View Article: PubMed Central - PubMed

Affiliation: Research in Ageing and Cognitive Health, School of Psychology, Bangor University, Bangor, UK. l.clare@bangor.ac.uk.

ABSTRACT

Background: Enabling 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/design: Over 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.

Discussion: The 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.

Show MeSH
Related in: MedlinePlus