Developing supportive local communities: Perspectives from people with dementia and caregivers participating in the IDEAL programme

ABSTRACT Communities play an important role in supporting people living with dementia. The aim of this study was to explore what could be changed in the local community to enable those with dementia to live well. People with dementia and carers taking part in the IDEAL programme responded to open-ended questions. Responses from 1,172 people with dementia and 702 caregivers were analyzed using thematic analysis. Four themes were identified: raising awareness, improving access to support services, providing social events and activities, and supporting people to engage in the community. These highlight the role of individuals, resources and the environment in supporting those with dementia. Longer-term investment in services is needed to underpin dementia-inclusive communities.

[1]  Liesbeth Opdenacker,et al.  Development and Testing , 2021, Radial Flow Turbocompressors.

[2]  Abdullah Alamer.  BASIC PSYCHOLOGICAL NEEDS, MOTIVATIONAL ORIENTATIONS, EFFORT, AND VOCABULARY KNOWLEDGE , 2021, Studies in Second Language Acquisition.

[3]  Chris Lynch,et al.  World Alzheimer Report 2019: Attitudes to dementia, a global survey , 2020 .

[4]  J. Rusted,et al.  Living Alone with Mild-To-Moderate Dementia: Findings from the IDEAL Cohort. , 2020, Journal of Alzheimer's disease : JAD.

[5]  C. Goodman,et al.  A survey of the experience of living with dementia in a dementia-friendly community , 2020, Dementia.

[6]  C. Victor,et al.  Caregiver influences on ‘living well’ for people with dementia: Findings from the IDEAL study , 2020, Aging & mental health.

[7]  I. Rippon,et al.  Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme , 2020, International journal of geriatric psychiatry.

[8]  H. Gage,et al.  The nature of positive post-diagnostic support as experienced by people with young onset dementia , 2020, Aging & mental health.

[9]  Chien-Liang Liu,et al.  Dementia-friendly community indicators from the perspectives of people living with dementia and dementia-family caregivers. , 2019, Journal of advanced nursing.

[10]  S. Biggs,et al.  Dementia as a source of social disadvantage and exclusion , 2019, Australasian journal on ageing.

[11]  Kezia Scales,et al.  Dementia friendly initiatives: A state of the science review , 2019, Dementia.

[12]  C. Goodman,et al.  Dementia Friendly Communities in England: A scoping study , 2019, International journal of geriatric psychiatry.

[13]  Alzheimer’s Society , 2018, The Grants Register 2019.

[14]  Roy W Jones,et al.  Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life , 2018, BMC Public Health.

[15]  C. Goodman,et al.  The place for dementia‐friendly communities in England and its relationship with epidemiological need , 2018, International journal of geriatric psychiatry.

[16]  Roy W Jones,et al.  A Comprehensive Model of Factors Associated With Subjective Perceptions of “Living Well” With Dementia , 2018, Alzheimer's & Dementia.

[17]  J. Rusted,et al.  Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia , 2018, Psychological Medicine.

[18]  K. McGannon,et al.  Developing rigor in qualitative research: problems and opportunities within sport and exercise psychology , 2017 .

[19]  J. Walsh.  Turning Up the Volume: unheard voices of people with dementia , 2017 .

[20]  A. Innes,et al.  Dementia‐friendly communities: challenges and strategies for achieving stakeholder involvement , 2017, Health & social care in the community.

[21]  Kirsty Bennett,et al.  The development and testing of the dementia friendly communities environment assessment tool (DFC EAT) , 2016, International Psychogeriatrics.

[22]  S. Gee,et al.  Developing a dementia‐friendly Christchurch: Perspectives of people with dementia , 2016, Australasian journal on ageing.

[23]  D. Spini,et al.  Meeting the Needs of the Growing Very Old Population: Policy Implications for a Global Challenge , 2016, Journal of aging & social policy.

[24]  L. Beech.  Code of practice for the recognition of dementia-friendly communities in England , 2016 .

[25]  E. Wiersma,et al.  From social network to safety net: Dementia-friendly communities in rural northern Ontario , 2016, Dementia.

[26]  M. Prince,et al.  World Alzheimer Report 2015 - The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends , 2015 .

[27]  J. Nixon,et al.  A systematic narrative review of support groups for people with dementia , 2015, International Psychogeriatrics.

[28]  F. Lewis,et al.  Dementia friendly, dementia capable, and dementia positive: concepts to prepare for the future. , 2015, The Gerontologist.

[29]  H. O’Rourke,et al.  Factors that Affect Quality of Life from the Perspective of People with Dementia: A Metasynthesis , 2015, Journal of the American Geriatrics Society.

[30]  J. Rusted,et al.  Improving the experience of dementia and enhancing active life - living well with dementia: study protocol for the IDEAL study , 2014, Health and Quality of Life Outcomes.

[31]  Kate Swaffer,et al.  Dementia: Stigma, Language, and Dementia-friendly , 2014, Dementia.

[32]  Kelly Fitzgerald,et al.  An Overview of Age-Friendly Cities and Communities Around the World , 2014, Journal of aging & social policy.

[33]  R. Eley,et al.  Dementia‐friendly communities: what the project “Creating a dementia‐friendly York” can tell us , 2013 .

[34]  Jerome Billeter,et al.  Building dementia-friendly communities: A priority for everyone , 2013 .

[35]  J. Wiles,et al.  The meaning of "aging in place" to older people. , 2012, The Gerontologist.

[36]  E. Burton,et al.  Designing Dementia‐Friendly Neighbourhoods: Helping People with Dementia to Get Out and About , 2010 .

[37]  M. Orrell,et al.  People with dementia living alone: what are their needs and what kind of support are they receiving? , 2010, International Psychogeriatrics.

[38]  U. Jakobsson.  Ageing and health , 2010, The Lancet.

[39]  R. Whittemore,et al.  Validity in Qualitative Research , 2001, Qualitative health research.

[40]  H. Brodaty,et al.  ALZHEIMER'S DISEASE INTERNATIONAL , 1997, International Psychogeriatrics.

[41]  S. Folstein,et al.  “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician , 1975 .

[42]  Dementia in Europe Yearbook 2018 Comparison of national dementia strategies in Europe , 2019 .

[43]  V. Braun,et al.  Please Scroll down for Article Qualitative Research in Psychology Using Thematic Analysis in Psychology , 2022 .

[44]  1 The GloBAl eCoNomiC impACT oF demeNTiA Alzheimer ’ s diseAse internAtionAl World Alzheimer report 2010 the GlobAl economic impAct of dementiA , 2022 .