TY - JOUR

T1 - Improving the experience of dementia and enhancing active life--living well with dementia

T2 - study protocol for the IDEAL study

AU - Clare, Linda

AU - Nelis, Sharon M

AU - Quinn, Catherine

AU - Martyr, Anthony

AU - Henderson, Catherine

AU - Hindle, John V

AU - Jones, Ian R

AU - Jones, Roy W

AU - Knapp, Martin

AU - Kopelman, Michael D

AU - Morris, Robin G

AU - Pickett, James A

AU - Rusted, Jennifer M

AU - Savitch, Nada M

AU - Thom, Jeanette M

AU - Victor, Christina R

PY - 2014/11/30

Y1 - 2014/11/30

N2 - 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.

AB - 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.

KW - Activities of Daily Living

KW - Adaptation, Psychological

KW - Caregivers

KW - Dementia

KW - Female

KW - Humans

KW - Interpersonal Relations

KW - Male

KW - Middle Aged

KW - Personal Satisfaction

KW - Quality of Life

KW - Residence Characteristics

KW - Self Concept

KW - United Kingdom

KW - Journal Article

KW - Research Support, Non-U.S. Gov't

U2 - 10.1186/s12955-014-0164-6

DO - 10.1186/s12955-014-0164-6

M3 - Article

C2 - 25433373

VL - 12

SP - 164

JO - Health and Quality of Life Outcomes

JF - Health and Quality of Life Outcomes

SN - 1477-7525

ER -