Home care in dementia: The views of informal carers from a co-designed consultation
Open accessAbstract
BACKGROUND: In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. METHODS: This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. FINDINGS: Carers' views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. CONCLUSION: Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.
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Delivering person-centred care becomes even more challenging because relational discontinuity prevents meaningful personalization of care.
“Furthermore, delivering person-centred care becomes even more challenging since relational discontinuity prevents meaningful personalization of care [41].”
From Towards defining quality in home care for persons living with dementia (2022) · cites this paper as [41]
Informal caregiver burden is well documented in the dementia literature, and burden increases with poor quality and lack of continuity of care.
“Informal caregiver burden is well documented in the dementia literature [40], as is the increase of burden with poor quality and lack of continuity of care [41].”
From Towards defining quality in home care for persons living with dementia (2022) · cites this paper as [41]
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Qualitative data analysis for applied policy research
Ritchie, J., & Spencer, L. (2010) · Analyzing qualitative data · doi:10.4324/9780203413081_chapter_9 · Cited by 4,800 · see citing works
Home care in Europe: a systematic literature review
Genet, N., Boerma, W. G. W., Kringos, D. S., Bouman, A. I. E., Francke, A. L., Fagerström, C., Melchiorre, M. G., Greco, C., & Devillé, W. L. J. M. (2011) · BMC Health Services Research · doi:10.1186/1472-6963-11-207 · Cited by 511 · see citing works
Caregiver burden—a critical discussion
Bastawrous, M. (2013) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2012.10.005 · Cited by 440 · see citing works
Hearing Their Voice: A Systematic Review of Dementia Family Caregivers’ Needs
McCabe, M., You, E., & Tatangelo, G. (2016) · The Gerontologist · doi:10.1093/geront/gnw078 · Cited by 300 · see citing works
Experienced Continuity of Care When Patients See Multiple Clinicians: A Qualitative Metasummary
Haggerty, J. L., Roberge, D., Freeman, G. K., & Beaulieu, C. (2013) · The Annals of Family Medicine · doi:10.1370/afm.1499 · Cited by 280 · see citing works
Physiological and functional consequences of caregiving for relatives with dementia
Fonareva, I., & Oken, B. S. (2014) · International Psychogeriatrics · doi:10.1017/s1041610214000039 · Cited by 249 · see citing works
Osman, S. E., Tischler, V., & Schneider, J. M. (2014) · Dementia · doi:10.1177/1471301214556291 · Cited by 188 · see citing works
Moral distress among social workers: The role of insufficient resources
der Kuip, M. M. (2015) · International Journal of Social Welfare · doi:10.1111/ijsw.12163 · Cited by 163 · see citing works
Quinn, C., Clare, L., & Woods, B. T. (2009) · International Psychogeriatrics · doi:10.1017/s1041610209990810 · Cited by 160 · see citing works
Basting, A. D. (2009) · Johns Hopkins University Press eBooks · doi:10.56021/9780801892493 · Cited by 156 · see citing works
Reflections on qualitative data analysis
Bryman, A. E., & Burgess, R. G. (2010) · Taylor & Francis eBooks · doi:10.4324/9780203413081_chapter_11 · Cited by 152 · see citing works
Crellin, N. E., Orrell, M. W., McDermott, O., & Charlesworth, G. M. (2014) · Aging & Mental Health · doi:10.1080/13607863.2014.915921 · Cited by 144 · see citing works
Measuring the impact of informal elderly caregiving: a systematic review of tools
Mosquera, I., Vergara, I., Larrañaga, I., Machón, M., del Río, M., & Calderón, C. (2015) · Quality of Life Research · doi:10.1007/s11136-015-1159-4 · Cited by 106 · see citing works
Literature review: Use of respite by carers of people with dementia
Neville, C., Beattie, E., Fielding, E., & MacAndrew, M. (2015) · Health & Social Care in the Community · doi:10.1111/hsc.12095 · Cited by 103 · see citing works
Person-Centered Assessment and Care Planning
Molony, S. L., Kolanowski, A. M., Haitsma, K. S. V., & Rooney, K. E. (2017) · The Gerontologist · doi:10.1093/geront/gnx173 · Cited by 95 · see citing works
Who cares and how much: exploring the determinants of co-residential informal care
Mentzakis, E., McNamee, P., & Ryan, M. (2008) · Review of Economics of the Household · doi:10.1007/s11150-008-9047-0 · Cited by 88 · see citing works
Karlsson, S., Bleijlevens, M. H. C., Roe, B. H., Saks, K., Martin, M. S., Stephan, A., Suhonen, R., Zabalegui, A., & Hallberg, I. R. (2014) · Journal of Advanced Nursing · doi:10.1111/jan.12581 · Cited by 72 · see citing works
Lethin, C., Hallberg, I. R., Karlsson, S., & Janlöv, A. (2015) · Scandinavian Journal of Caring Sciences · doi:10.1111/scs.12275 · Cited by 68 · see citing works
Peacock, S. C. (2013) · Palliative and Supportive Care · doi:10.1017/s1478951512000831 · Cited by 61 · see citing works
Denton, M. A., Brookman, C., Zeytinoglu, I. U., Plenderleith, J. M., & Barken, R. (2014) · Health & Social Care in the Community · doi:10.1111/hsc.12168 · Cited by 56 · see citing works
Models of home care services for persons with dementia: a narrative review
Low, L., Fletcher, J., & Brodaty, H. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215000137 · Cited by 47 · see citing works
Cooper, C., Cenko, B., Dow, B., & Rapaport, P. (2017) · International Psychogeriatrics · doi:10.1017/s1041610216002386 · Cited by 30 · see citing works
Zeytinoglu, I. U., Denton, M. A., Plenderleith, J. M., & Chowhan, J. (2015) · The International Journal of Human Resource Management · doi:10.1080/09585192.2014.1003082 · Cited by 27 · see citing works
Clarkson, P., Hughes, J., Roe, B. H., Giebel, C. M., Jolley, D. J., Poland, F. M., Abendstern, M., Chester, H., Challis, D., & Members of the HoSt‐D (Home Support in Dementia) Programme Management Group (2017) · Journal of Advanced Nursing · doi:10.1111/jan.13460 · Cited by 26 · see citing works
Self-citationGiebel, C. M., Roe, B. H., Hodgson, A. M., Britt, D. P., Clarkson, P., & Members of the HoST-D (Home Support in Dementia) Programme Management Group and Patient Public and Carer Involvement Groups (2017) · Dementia · doi:10.1177/1471301216687698 · Cited by 25 · see citing works
Self-citationCunningham, N. A., Cowie, J., Watchman, K., & Methven, K. (2019) · Dementia · doi:10.1177/1471301219859781 · Cited by 23 · see citing works
Larsen, L. S., Normann, H. K., & Hamran, T. (2019) · Dementia · doi:10.1177/1471301216682626 · Cited by 20 · see citing works
An evaluation of the needs and service usage of family carers of people with dementia
Cascioli, T., Al-Madfai, H., Oborne, P., et al. (2008) · Quality in Ageing and Older Adults · doi:10.1108/14717794200800011 · Cited by 19 · see citing works
Car, L. T., El-Khatib, M., Perneczky, R., Papachristou, N., Atun, R. A., Rudan, I., Car, J., Vincent, C. A., & Majeed, A. (2017) · BMC Geriatrics · doi:10.1186/s12877-017-0415-6 · Cited by 19 · see citing works
Hamad, E. O., AlHadi, A. N., Lee, C., Savundranayagam, M. Y., Holmes, J. D., Kinsella, E. A., & Johnson, A. M. (2017) · Journal of Cross-Cultural Gerontology · doi:10.1007/s10823-017-9320-x · Cited by 6 · see citing works
Dementia awareness: providing person-centred care
Veselinova, C. (2013) · Nursing and Residential Care · doi:10.12968/nrec.2013.15.9.622 · Cited by 3 · see citing works
Flagged first, then by citations
Research works printed but not linked: 4
- Anthony A. (2015). Connecting communities in London. In Milne A. Smith J. (Eds.). Dementia, ethnicity and care homes. Dementia, culture and ethnicity: Issues for all, (Vol. 33). Jessica Kingsley Publishing.
- Bryman A. Burgess R.G. (1994). Developments in qualitative data analysis. In Bryman A. Burgess RG. (Eds.) Analyzing qualitative data, (pp. 1- 17). Routledge.
- Jansen H. (2010) The logic of qualitative survey research and its position in the field of social research methods. Forum: Qualitative Social Research, 11(2), 11.
- Milne A. Smith J. (2015). Dementia, ethnicity and care homes. Dementia, culture and ethnicity: Issues for all, (Vol. 33). Jessica Kingsley Publishing.
Cited by
Sorted by citations
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Khemai, C., Meijers, J. M., Mujezinovic, I., Bolt, S. R., Pieters, S., Moser, A., Schols, J. M. G. A., & Janssen, D. J. A. (2022) · Dementia · doi:10.1177/14713012221098259 · Cited by 17 · see citing works
Saragosa, M., Kuluski, K., Okrainec, K., & Jeffs, L. (2023) · Journal of Aging Studies · doi:10.1016/j.jaging.2023.101132 · Cited by 13 · see citing works
Towards defining quality in home care for persons living with dementia
Saragosa, M., Jeffs, L., Okrainec, K., & Kuluski, K. (2022) · PLOS ONE · doi:10.1371/journal.pone.0274269 · Cited by 10 · see citing works
- Authors
- Dalgarno, E. L., Gillan, V., Roberts, A., Tottie, J., Britt, D., Toole, C., & Clarkson, P.
- Affiliations
- University of Manchester (GB)
- Family Carer, Together in Dementia, Liverpool, UK
- Family Carer, Manchester, UK
- Family Carer, Sight and Mind, Merseyside, UK
- Corresponding author
- Dalgarno, Elizabeth L
- Venue
- Dementia
- Publisher
- SAGE Publications
- Published
- 2021-02-03
- Volume
- 20
- Issue
- 7
- Pages
- 2261-2277
- ISSN
- 1471-3012 (ISSN-L)
- 1741-2684
- PMC
- PMC8564226
- OpenAlex
- W3127352792
- Cited by
- 27
- References
- 31
- Citations by year
- 2026: 4 · 2025: 5 · 2024: 3 · 2023: 9 · 2022: 3 · 2021: 3
- FWCI
- 3.20
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Dementia (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, other-oa)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Research Explorer (The University of Manchester) (publishedVersion, other-oa)
- Funders
- The National Institute for Health Research (NIHR), School for Social Care Research (1162242)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- home care, informal caregivers, caregiver perspectives, care coordination, individualized care, care planning, collaboration, citizen participation, co-design, professional caregivers
- MeSH terms
- Dementia, Home Care Services, Humans, Quality of Health Care, Referral and Consultation, Caregivers
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