Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-23T14:32:37.178Z Has data issue: false hasContentIssue false
  • English
  • Français

Right at home: living with dementia and multi-morbidities

Published online by Cambridge University Press:  07 August 2020

Nicola A. Cunningham Open the ORCID record for Nicola A. Cunningham [Opens in a new window] ,
Julie Cowie  and
Karen Methven
Nicola A. Cunningham*
Affiliation:
Faculty of Health Sciences, University of Stirling, Stirling, UK
Julie Cowie
Affiliation:
NMAHP RU, Glasgow Caledonian University, Glasgow, UK
Karen Methven
Affiliation:
Faculty of Health Sciences, University of Stirling, Stirling, UK
*
*Corresponding author. Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Dementia is recognised as the biggest health crisis of our time in terms of high personal and social costs and wider impact on health and social care systems. Increases in people living with dementia and multi-morbidities presents critical challenges for home care worldwide. Health-care systems struggle to provide adequate home-care services, delivering limited care restricted to a single-condition focus. This study explored the experiences and expectations of home care from the multiple perspectives of people living with dementia and multi-morbidities and home-care workers providing support. Findings draw from qualititative semi-structured interviews with people with dementia (N = 2), their partners (N = 2), other partners or family carers (N = 6) and home-care workers (N = 26). Three themes are identified: (a) the preference for and value of home; (b) inadequate home-care provision and enhanced care burden; and (c) limited training and education. Despite continued calls for home-care investment, the focus on reduction in costs hides key questions and further dialogue is required exploring how people with dementia can be supported to live independently and flourish at home. This study considers these complex experiences and care requirements through the prism of disability and human rights frameworks. This paper concludes with consideration of more recent human social rights debate. We discuss critically what this may mean for people living with dementia and consider the implications for co-requisite policy development to optimise available home-care support.

Keywords

dementiamulti-morbiditieshome careindependent livingsocial rights
Type
Article
Information
Ageing & Society , Volume 42 , Issue 3 , March 2022 , pp. 632 - 656
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abrams, R, Vandrevala, T, Samsi, K and Manthorpe, J (2019) The need for flexibility when negotiating professional boundaries in the context of homecare, dementia and end of life. Ageing & Society 39, 1976–1995.10.1017/S0144686X18000375CrossRefGoogle Scholar
Abreu, W, Tolson, D, Jackson, GA and Costa, N (2020) A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia. Dementia: International Journal of Social Research and Practice 19, 301–318.10.1177/1471301218773842CrossRefGoogle ScholarPubMed
All-Party Parliamentary Group on Dementia (2019) Hidden No More. Dementia and Disability. London: House of Commons. Available at https://www.alzheimers.org.uk/sites/default/files/2019-06/APPG_on_Dementia_2019_report_Hidden_no_more_dementia_and_disability_media.pdf.Google Scholar
Alzheimer Europe (2017) Dementia as a Disability? Implications for Ethics, Policy and Practice. Luxembourg: Alzheimer Europe.Google Scholar
Alzheimer's Society (2016) Fix Dementia Care: Home Care. London: Alzheimer's Society. Available at https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/fix_dementia_care_homecare_report.pdf.Google Scholar
Andrews, GJ, Evans, J and Wiles, J (2013) Re-spacing and re-placing gerontology: relationality and affect. Ageing & Society 33, 1339–1373.10.1017/S0144686X12000621CrossRefGoogle Scholar
Barnett, K, Mercer, SW, Norbury, M, Watt, G, Wyke, S and Guthrie, B (2012) Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. The Lancet 380, 37–43.10.1016/S0140-6736(12)60240-2CrossRefGoogle ScholarPubMed
Bennett, L, Honeyman, M and Bottery, S (2018) New Models of Home Care. London: The King's Fund. Available at https://www.kingsfund.org.uk/publications/new-models-home-care.Google Scholar
Blytt, K, Selbaek, G, Drageset, J, Natvig, G and Husebo, B (2018) Comorbid dementia and cancer in residents of nursing homes. Secondary analyses of a cross-sectional study. Cancer Nursing: An International Journal for Cancer Care 1, 13–20.CrossRefGoogle Scholar
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101.CrossRefGoogle Scholar
Brownlee, K (2013) A human right against social deprivation. The Philosophical Quarterly 63, 199–222.10.1111/1467-9213.12018CrossRefGoogle Scholar
Bunn, F, Burn, A-M, Robinson, L, Poole, M, Rait, G, Brayne, C, Schoeman, J, Norton, S and Goodman, C (2017) Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals. BMJ Open 7, e013067.10.1136/bmjopen-2016-013067CrossRefGoogle ScholarPubMed
Burger, SA, Hayt, H, Comabella, C, Poots, A and Perris, A (2018) Exploring Education and Training in Relation to Older People's Health and Social Care (Report prepared for Dunhill Medical Trust). Oxford: Picker Institute Europe. Available at http://allcatsrgrey.org.uk/wp/download/older_people_2/P3159_Dunhill-Medical-Trust_Older-peoples-care-staff-training_FULL-Report_SAB-HH-AJP-JK_120718_FINAL.pdf.Google Scholar
Cacchione, P (2011) People with dementia: capacity to consent to research participation. Clinical Nursing Research 20, 223–227.10.1177/1054773811415810CrossRefGoogle ScholarPubMed
Cahill, S (2018) Dementia and Human Rights. Bristol, UK: Policy Press.Google Scholar
Cahill, S (2019) WHO's global action plan on the public health response to dementia: some challenges and opportunities. Aging and Mental Health 24, 197–199.CrossRefGoogle ScholarPubMed
Care Quality Commission (2016) People with Dementia. A Different Ending: Addressing Inequalities in End of Life Care. London: Care Quality Commission.Google Scholar
Care Quality Commission (2017) The State of Adult Social Care Services 2014–2017. Findings from CQC's Initial Programme of Comprehensive Inspections in Adult Social Care. London: Care Quality Commission.Google Scholar
Clarkson, P, Hughes, J, Roe, B, Giebel, C, Jolley, D, Poland, F and Challis, D (2017) Systematic review: Effective home support in dementia care, components and impacts – Stage 2, effectiveness of home support interventions. Journal of Advanced Nursing 74, 504–527.Google ScholarPubMed
Cohen, D and Crabtree, B (2008) Evaluative criteria for qualitative research in health care: controversies and recommendations. Annals of Family Medicine 6, 331–339.10.1370/afm.818CrossRefGoogle ScholarPubMed
Collins, RN and Kishita, N (2020) Prevalence of depression and burden among informal caregivers of people with dementia: a meta-analysis. Ageing & Society 40, 2355–2392.CrossRefGoogle Scholar
Cook, P and McCarthy, A (2018) Cancer treatment decision making with/for older adults with dementia: the intersections of autonomy, capital, and power. Health Sociology Review 27, 184–198.CrossRefGoogle Scholar
Cooper, C, Lodwick, R, Walters, K, Raine, R, Manthorpe, J, llife, S and Petersen, I (2017) Inequalities in receipt of mental and physical healthcare in people with dementia in the UK. Age and Ageing 46, 393–400.Google ScholarPubMed
Cunningham, N, Cunningham, T and Robertson, J (2019a) Understanding and measuring the wellbeing of carers of people with dementia. The Gerontologist 59, e552–e564.Google Scholar
Cunningham, N, Cowie, J, Watchman, K and Methven, K (2019b) Understanding the training and education needs of homecare workers supporting people with dementia and cancer: a systematic review of reviews. Dementia. Available First Online doi:10.1177/1471301219859781.Google Scholar
D'Astous, V, Abrams, R, Vandrevala, T, Samsi, K and Manthorpe, J (2017) Gaps in understanding the experiences of homecare workers providing care for people with dementia up to the end of life: a systematic review. Dementia 18, 970–989.CrossRefGoogle Scholar
Dawson, A, Bowes, A, Kelly, F, Velzke, K and Ward, R (2015) Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach. BMC Geriatrics 15, 59.CrossRefGoogle ScholarPubMed
Dekkers W (2011) Dwelling, house and home: towards a home-led perspective on dementia care. Medicine, Health Care and Philosophy 14, 291–300.CrossRefGoogle Scholar
Department for Work and Pensions (2018) Concluding Observations on the Initial Report of the United Kingdom of Great Britain and Northern Ireland: Initial Government Response. London: Department for Work and Pensions. Available at https://www.gov.uk/government/publications/disabled-peoples-rights-information-following-the-uks-first-periodic-review/concluding-observations-on-the-initial-report-of-the-united-kingdom-of-great-britain-and-northern-ireland-initial-government-response.Google Scholar
Department of Health (2015) Prime Minister's Challenge on Dementia 2020. London: Department of Health. Available at https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020.Google Scholar
Exley, C and Allen, D (2007) A critical examination of home care: end of life care as an illustrative case. Social Science and Medicine 65, 2317–2327.CrossRefGoogle ScholarPubMed
Forsund, L, Grov, E, Helvik, A-S, Juvet, L, Skovdahl, K and Eriksen, S (2018) The experience of lived space in persons with dementia: a systematic meta-synthesis. BMC Geriatrics 18, 13.10.1186/s12877-018-0728-0CrossRefGoogle ScholarPubMed
Gale, G, Bunce, A and Johnson, L (2006) How many interviews are enough? An experiment with data saturation and variability. Field Methods 18, 59–82.Google Scholar
Heidegger, M (1985) History of the Concept of Time. Bloomington, IN: Indiana University Press.Google Scholar
Hopkinson, J, Milton, R and King, A (2016) People with dementia: what is known about their experience of cancer treatment and cancer treatment outcomes? A systematic review. Psycho-Oncology 25, 1137–1146.CrossRefGoogle ScholarPubMed
Huang, H-K, Hsieh, J-G, Hsieh, C-J and Wang, Y-W (2017) Do cancer patients with dementia receive less aggressive treatment in end-of-life care? A nationwide population-based cohort study. Oncotarget 8, 63596–63604.CrossRefGoogle ScholarPubMed
Ilinca, S, Leichsenring, K and Rodrigues, R (2015) From Care in Homes to Care at Home: European Experiences with (De) Institutionalisation in Long-term Care (Policy Brief). Vienna: European Centre. Available at https://www.euro.centre.org/publications/detail/420.Google Scholar
Imogen Blood and Associates (2017) Evidence Review of Dementia-friendly Communities. Abercynon, European Union Joint Action on Dementia.Google Scholar
Jefferson, L, Bennett, L, Hall, P, Cream, J, Dale, V, Honeyman, M and Murray, R (2018) Home Care in England. Views from Commissioners and Providers. London: The King's Fund. Available at https://www.kingsfund.org.uk/publications/home-care-england.Google Scholar
Kelly, F and Innes, A (2013) Human rights, citizenship and dementia care nursing. International Journal of Older People Nursing 8, 61–70.10.1111/j.1748-3743.2011.00308.xCrossRefGoogle ScholarPubMed
Kitwood, T (1997) Dementia Reconsidered: The Person Comes First. Buckingham, UK: Open University Press.Google Scholar
La Fontaine, J and Oyebode, J (2014) Family relationships and dementia: a synthesis of qualitative research including the person with dementia. Ageing & Society 34, 1243–1272.CrossRefGoogle Scholar
Lawrence, V (2019) Independence and the pernicious threat of multimorbidity. Age and Ageing 48, 472–473.10.1093/ageing/afz024CrossRefGoogle ScholarPubMed
Lee, R, Bamford, C, Poole, M, McLellan, E, Exley, C and Robinson, L (2017) End of life care for people with dementia: the views of health professionals, social care service managers and frontline staff on key requirements for good practice. PLOS ONE 12, 6: e0179355.Google ScholarPubMed
Li, X, Keady, J and Ward, R (2021) Transforming lived places into the connected neighbourhood: a longitudinal narrative study of five couples where one partner has an early diagnosis of dementia. Ageing & Society 41, 605–627.10.1017/S0144686X1900117XCrossRefGoogle Scholar
Martin, C, Shrestha, A, Burton, M, Collins, K and Wyld, L (2019) How are caregivers involved in treatment decision making for older people with dementia and a new diagnosis of cancer? Psycho-Oncology 28, 1197–1206.CrossRefGoogle Scholar
McCabe, M, You, E and Tatangelo, G (2016) Hearing their voice: a systematic review of dementia family caregivers’ needs. The Gerontologist 56, 70–88.CrossRefGoogle ScholarPubMed
McWilliams, L, Farrell, C, Grande, G, Keady, J, Swarbrick, C and Yorke, J (2017) A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care. Aging & Mental Health 22, 1254–1271.10.1080/13607863.2017.1348476CrossRefGoogle ScholarPubMed
McWilliams, L, Swarbrick, C, Yorke, J, Burgess, L, Farrell, C, Grande, G, Bellhouse, S and Keady, J (2020) Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers. Ageing & Society 40, 944–965.CrossRefGoogle Scholar
Millar, D (2012) Grounding human rights. Critical Review of International Social and Political Philosophy 15, 407–427.CrossRefGoogle Scholar
National Institute for Health and Care Excellence (2016) Multimorbidity: Clinical Assessment and Management (NICE Guidelines NG56). London: National Institute for Health and Care Excellence.Google Scholar
Nelis, SM, Wu, Y-T, Matthews, FE, Martyr, A, Quinn, C, Rippon, I, Rusted, J and Thom, J (2019) The impact of co-morbidities on the quality of life of people with dementia: findings from the IDEAL study. Age and Ageing 43, 361–367.CrossRefGoogle Scholar
Nicholson, K, Makovski, TT, Griffith, LE, Raina, P, Stranges, S and van den Akker, M (2019) Multimorbidity and comorbidity revisited: refining the concepts for international health research. Journal of Clinical Epidemiology 105, 142–146.10.1016/j.jclinepi.2018.09.008CrossRefGoogle ScholarPubMed
Office for National Statistics (ONS) (2018) Living Longer: How Our Population is Changing and Why it Matters. London: ONS. Available at https://www.ons.gov.uk/releases/livinglongerhowourpopulationischangingandwhyitmatters.Google Scholar
Patton, M (1990) Qualitative Evaluation and Research Methods. Beverley Hills, CA: Sage.Google Scholar
Perion, J and Steiner, V (2017) Perceptions of reciprocity in friendship by community dwelling people with mild to moderate dementia. Dementia 18, 2107–2121.10.1177/1471301217742503CrossRefGoogle ScholarPubMed
Public Health England (2019) Dementia: Comorbidities in Patients – Data Briefing November 2019. London: Public Health England.Google Scholar
Quinn, C (2017) Conducting interviews with people with dementia and their caregivers. Sage Research Methods Cases. London: Sage.Google Scholar
Quinn, C, Clare, L and Woods, R (2015) Balancing needs: the role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia. Dementia 14, 220–237.CrossRefGoogle ScholarPubMed
Rondon-Sulbaran, J, Daly-Lynn, J, McCormack, B, Ryan, A and Martin, S (2021) An exploration of the experiences of informal carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation. Ageing & Society 41, 1–28.10.1017/S0144686X19001028CrossRefGoogle Scholar
Rowles, GD and Bernard, M (eds) (2013) Making Meaningful Places in Old Age. New York, NY: Springer.Google Scholar
Salisbury, C, Guthrie, B, Bower, P and Mercer, SW (2018) How Should Health Policy Respond to the Growing Challenge of Multimorbidity? Bristol, UK: University of Bristol.Google Scholar
Scrutton, J and Brancati, CU (2016) Dementia and Comorbidities. Ensuring Parity of Care. London: ILC.Google Scholar
Shafir, A, Garrigues, S, Schenker, Y, Leff, B, Neil, J and Ritchie, C (2016) Homebound patient and caregiver perceptions of quality of care in home-based primary care: a qualitative study. Journal of the American Geriatrics Society 64, 1622–1627.10.1111/jgs.14244CrossRefGoogle ScholarPubMed
Shakespeare, T, Zeilig, H and Mittler, P (2017) Rights in mind: thinking differently about dementia and disability. Dementia 18, 1075–1088.10.1177/1471301217701506CrossRefGoogle Scholar
Shea E, O’, Shea E, O’, Timmons, S and Irving, K (2019) The perspectives of people with dementia on day and respite services: a qualitative interview study. Ageing & Society. Available online doi:10.1017/S0144686X1900062X.Google Scholar
Silverman, D (2011) Interpreting Qualitative Data, 4th Edn. Los Angeles, CA: Sage.Google Scholar
Sixsmith, A and Sixsmith, J (2008) Ageing in place in the United Kingdom. Ageing International 32, 219–235.CrossRefGoogle Scholar
Tatangelo, G, McCabe, M, Macleod, A and You, E (2018) ‘I don't just focus on my needs.’ The unmet health needs of partner and offspring caregivers of people with dementia: a qualitative study. International Journal of Nursing Studies 77, 8–14.CrossRefGoogle ScholarPubMed
Thomas, C and Milligan, C (2018) Dementia, disability rights and disabilism: understanding the social position of people living with dementia. Disability and Society 33, 115–131.CrossRefGoogle Scholar
United Nations (2016) Inquiry Concerning the United Kingdom of Great Britain and Northern Ireland Carried Out by the Committee Under Article 6 of the Optional Protocol. Available at https://digitallibrary.un.org/record/1310721?ln=en.Google Scholar
van der Willik, K, Schagen, S and Ikram, A (2018) Cancer and dementia: two sides of the same coin? European Journal of Clinical Investigation 48, 11.10.1111/eci.13019CrossRefGoogle ScholarPubMed
Vasileiou, K, Barnett, J, Thorpe, S and Young, T (2018) Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period. BMC Medical Research Methodology 18, 148.CrossRefGoogle Scholar
Vernooij-Dassen, M and Jeon, Y-H (2016) Social health and dementia: the power of human capabilities. International Psychogeriatrics 28, 701–703.CrossRefGoogle ScholarPubMed
Ward, R, Clark, A, Campbell, S, Graham, B, Kullberg, A, Manji, K, Rummery, K and Keady, J (2018) The lived neighbourhood: understanding how people with dementia engage with their local environment. International Psychogeriatrics 30, 867–880.10.1017/S1041610217000631CrossRefGoogle ScholarPubMed
Witham, G, Haigh, C, Mitchell, D and Beddow, A (2017) Carer experience supporting someone with dementia and cancer: a narrative approach. Qualitative Health Research 28, 813–823.CrossRefGoogle ScholarPubMed
Wittenberg, R, Hu, B, Barraza-Araiza, L and Renhill, A (2019) Projections of Older People with Dementia and Costs of Dementia Care in the United Kingdom, 2019–2040. London: CPEC. Available at https://www.alzheimers.org.uk/sites/default/files/2019-11/cpec_report_november_2019.pdf.Google Scholar
World Health Organization (2017) Dementia Fact Sheet. Geneva: World Health Organization.Google Scholar