Miroslava Tokovska
School of Health Science, Kristiania University College, Oslo, Norway.
https://orcid.org/0000-0002-8279-3168
Magde Mohamed Nour
chool of Health Science, Kristiania University College, Oslo; Department of Information Science and Media Studies, University of Bergen, Bergen, Norway.
https://orcid.org/0000-0003-2082-8246
Anette Sørensen
School of Health Science, Kristiania University College, Oslo, Norway.
https://orcid.org/0000-0002-6435-7653
Ursula Småland Goth
School of Health Science, Kristiania University College, Oslo, Norway.
ABSTRACT
Various countries in Europe have different strategies for promoting care solutions for dementia challenges. The different approaches of Austria, Belgium, Czechia, Denmark, Finland, Germany, Gibraltar, Ireland, Israel, Malta, Nederland, Norway, Sweden and the United Kingdom (Scotland and Wales) were investigated. Dementia has a significant social, psychological and economic impact on the individual, family and society. As the disease progresses dementia sufferers become increasingly dependent.
As many dementia sufferers are at home during the initial stages, the physical, emotional, and social demands of the dementia sufferers are often covered by informal caregivers. This study, therefore, aims to investigate the integration of psychosocial interventions for comprehensive care pertaining to informal caregivers of people with dementia in Europe. Furthermore, the study will highlight how implementation of technologies might enable psychosocial support of informal caregivers. The data is based on 15 national dementia strategies from various European countries.
Data was based on preexisting coding systems with the predefined keywords and analyzed by qualitative content analysis by four of the authors. Our results show that psychosocial support is provided in various modalities and that informal caregivers need to be supported by a psychosocial approach. Due to this need the national dementia strategies should include measures to reduce the emotional burden of informal caregivers. Psychosocial support provided to informal caregivers in a comprehensive and systematic way is likely to enable informal caregivers to handle the emotional, cognitive, and behavioral consequences of the disease and its treatment, while helping to maintain their work-life balance.
REFERENCES
Alzheimer’s Disease International. World Alzheimer Report 2019: Attitudes to dementia 2019 [updated 2019/09/20]. Available from: https://www.alzint.org/u/WorldAlzheimerReport2019.pdf
Alzheimer’s Association. Dementia 2019. Available from: https://www.alz.org/media/Documents/alzheimers-dementia-ts.pdf
Borsje P, Hems MA, Lucassen PL, et al. Psychological distress in informal caregivers of patients with dementia in primary care: course and determinants. Family Pract 2016;33:374-81.
Madruga M, Gozalo M, Prieto J, et al. Psychological symptomatology in informal caregivers of persons with dementia: Influences on health-related quality of life. Int J Environ Res Public Health 2020;17:1078.
Malhotra C, Hazirah M, Tan LL, et al. Family caregiver perspectives on suffering of persons with severe dementia: A qualitative study. J Pain Symptom Manage 2021;62:20-7.e2.
Alzheimer Europe. The 2019 Alzheimer Europe Yearbook, “Estimating the prevalence of dementia in Europe”. Dementia in Europe Yearbooks. 2019. Available from: https://www.alzheimer-europe.org/Publications/Dementia-in-Europe-Yearbooks
Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: A reappraisal from population-based studies. Gerontologist 2015;55:309-19.
Stall N. We should care more about caregivers. CMAJ 2019;191:E245-6.
Rasmussen J, Langerman H. Alzheimer’s disease–why we need early diagnosis. Degener Neurol Neuromuscul Dis 2019;9:123.
Thomas P, Liu H, Umberson D. Family realtionships and well being. Innov Aging 2017;1:igx025.
Brente TL, Goth US. [Next of kin for grown-ups in mental health care: a health-promoting perspective].[Article in Norwegian]. Tidskrift for psykisk helsearbeid 2020;17:129-38.
Addati L, Cattaneo U, Esquivel V, Valarino I. Care work and care jobs for the future of decent work. International Labour Organization; 2018.
Alzheimer Europe. Alzheimer Europe 2021. Available from: https://www.alzheimer-europe.org/Alzheimer-Europe.
Lauritzen J, Pedersen PU, Sørensen EE, Bjerrum MB. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review. JBI Database System Rev Implement Rep 2015;13:373-433.
McDermott O, Charlesworth G, Hogervorst E, et al. Psychosocial interventions for people with dementia: a synthesis of systematic reviews. Aging Mental Health 2019;23:393-403.
Lepore SJ. Social Support. In: Ramachandran VS, editor. Encyclopedia of Human Behavior (Second Edition). San Diego: Academic Press; 2012. p. 493-6.
Schiefloe, Per Morten. Sosiale landskap og sosial kapital: Nettverk Og Nettverksforskning: Oslo: Universitetsforlaget; 2015.
Teahan A, Lafferty A, McAuliffe E, et al. Psychosocial interventions for family carers of people with dementia: A systematic review and meta-analysis. J Aging Health 2020;32:1198-213.
Bowen, Glenn A. Document analysis as a qualitative research method. Qual Res J 2009;9:27-40.
Parveen H, Showkat N. An integrative approach to content analysis. In: KA Neuendrof, Editors The Content Analysis Guidebook. Sage; 2017. p. 36–69.
McMillan J, Schumacher S. Research in education 7th ed. Harlow: Pearson Education Limited. 2014.
Alzheimer Europe. The Austrian Dementia Strategy “Living well with dementia“ 2015. Austria Minstry of Health and Ministry of Social Affairs 2019. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Austria
Alzheimer Europe. Continuing to build a dementia-friendly Flanders together Updated Dementia Plan for Flanders 2016 – 2019. 2016. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Belgium-Flanders
Alzheimer Europe. Czech National Dementia Strategy 2016-2019 Czech Republic Ministry of Health, Minister of Labour and Social Affairs and Minister of Education 2021. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Czech-Republic
Alzheimer Europe. Denmark National Action Plan on Dementia 2025. Denmark Minister of Health 2017. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Denmark
Alzheimer Europe. Finland national dementia strategy “National Memory Programme” 2012-2020. Finland Minister of Social Affairs and Health 2012. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Finland
Alzheimer Europe. German National Dementia Strategy. Germany Federal Ministry for Family Affairs, Senior Citizens, Women and Youth, Federal Ministry of Health 2020. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Germany
Alzheimer Europe. Gibraltar National Dementia Strategy 2018-2021. Gibraltar government 2018. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Gibraltar
Alzheimer Europe. The Irish National Dementia Strategy. Ireland Minister for Health 2014. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Ireland
Brodsky J, Bentur N, Laron M, Ben-Israel S. Addressing Alzheimer’s and other types of dementia: Israeli National Strategy. Jerusalem: Myers-JDC-Brookdale Institute; 2013.
Scerri C. Empowering change: a national strategy for dementia in the Maltese Islands 2015-2023. 2015. Avialable from: https://www.um.edu.mt/library/oar/handle/123456789/27845
Alzheimer Europe. Dutch National Dementia Plan 2021-2030. Netherlands Ministry of Health Welfare and Sport 2020. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Netherlands
Alzheimer Europe. Norwegian Dementia Plan 2025. Norwegian Ministry of Health Care Services 2020. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Norway
Alzheimer Europe. Swedish National Dementia Strategy. Sweden Ministry of Health and Social Affairs. 2018. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/Sweden
Alzheimer Europe. Scotland National Dementia Strategy 2017-2020. Scottish Government 2017. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/United-Kingdom-Scotland
Alzheimer Europe. Dementia Action Plan for Wales 2018-2022. Llzwodreth Cymru Welsh Government 2018. Available from: https://www.alzheimer-europe.org/Policy/National-Dementia-Strategies/United-Kingdom-Wales
Tokovská M. [Support groups for relatives of Alzheimer’s patients].[Article in Norwegian with English Abstract] Via Practica 2016;13:160-2.
Rosenberg A, Tokovská M. Participation in a support group from the perspective of family caregivers of Alzheimer’s disease patients. Osetrovatelstvo 2017;7:53-7. Availbale from: https://www.osetrovatelstvo.eu/en/archive/2017-volume-7/number-2/participation-in-a-support-group-from-the-perspective-of-family-caregivers-of-alzheimer-s-disease-patients
Kjallman Alm A, Hellzen O, Norbergh KG. Experiences of long term ongoing structured support in early stage of dementia–a case study. Int J Older People Nurs 2014;9:289-97.
Bökberg C, Ahlström G, Leino‐Kilpi H, et al. Care and service at home for persons with dementia in Europe. J Nurs Scholarsh 2015;47:407-16.
Vaingankar JA, Chong SA, Abdin E, et al. Psychiatric morbidity and its correlates among informal caregivers of older adults. Comprehen Psychiatry 2016;68:178-85.
Wolff JL, Freedman VA, Mulcahy JF, Kasper JD. Family caregivers’ experiences with health care workers in the care of older adults with activity limitations. JAMA Network Open. 2020;3:e1919866-e.
Birkenhäger-Gillesse EG, Kollen BJ, Zuidema SU, Achterberg WP. The “more at home with dementia” program: a randomized controlled study protocol to determine how caregiver training affects the well-being of patients and caregivers. BMC Geriatrics 2018;18:1-8.
Lindeza P, Rodrigues M, Costa J, Guerreiro M, Rosa MM. Impact of dementia on informal care: a systematic review of family caregivers’ perceptions. BMJ Support Palliat Care 2020; bmjspcare-2020-002242.
Seeher K, Brodaty H. Family carers of people with dementia. In: D Ames, JT O’Brien, A Burns, Editors. Dementia. CRC Press; 2017. p. 162-80.
Newman K, Wang AH, Wang AZY, Hanna D. The role of internet-based digital tools in reducing social isolation and addressing support needs among informal caregivers: a scoping review. BMC Public Health 2019;19:1-12.
Tretteteig S, Vatne S, Rokstad AMM. The influence of day care centres designed for people with dementia on family caregivers–a qualitative study. BMC Geriatrics 2017;17:1-11.
Hartley D, Blumenthal T, Carrillo M, et al. Down syndrome and Alzheimer’s disease: Common pathways, common goals. Alzheimers Dement 2015;11:700-9.
Zigman WB. Atypical aging in Down syndrome. Dev Disabil Res Rev 2013;18:51-67.