Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
BMC Geriatrics
Published in: BMC Geriatrics 1/2020

Open Access 01-12-2020 | Care | Research article

Family carers’ involvement strategies in response to sub-optimal health services to older adults living with dementia – a qualitative study

Authors: Kristin Häikiö, Mette Sagbakken, Jorun Rugkåsa

Published in: BMC Geriatrics | Issue 1/2020

Login to get access

Abstract

Background

While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities.

Methods

Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology.

Results

Two main involvement strategies were identified: 1) being “the hub in the wheel” and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers’ weighing conflicting concerns and perceived costs and benefits.

Conclusions

Awareness and acknowledgment of family carers’ strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers’ own perspectives on carer involvement is a necessary precursor to developing good care partnerships.
Literature
1.
Leicht H, Heinrich S, Heider D, Bachmann C, Bickel H, van den Bussche H, et al. Net costs of dementia by disease stage. Acta Psychiatr Scand. 2011;124(5):384–95.PubMed
2.
Winslow BW. Family caregivers' experiences with community services: a qualitative analysis. Public Health Nurs. 2003;20(5):341–8.PubMed
3.
Ward-Griffin C, McKeever P. Relationships between nurses and family caregivers: partners in care? Adv Nurs Sci. 2000;22(3):89–103.
4.
Reid RC, Chappell NL. Family involvement in nursing homes: are family caregivers getting what they want? J Appl Gerontol. 2017;36(8):993–1015.PubMed
5.
Miller LM, Whitlatch CJ, Lyons KS. Shared decision-making in dementia: A review of patient and family carer involvement. Dementia (London, England). 2016;15(5):1141–57.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
Rugkåsa J. Care and culture. Care relations from the perspectives of mental health caregivers in ethnic minority families. Newcastle: Cambridge Scholars Publishing; 2015.
16.
17.
Ryan T, Amen KM, McKeown J. The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature. Ann Palliat Med. 2017;6(4):380–9.PubMed
18.
19.
Smebye KL, Kirkevold M, Engedal K. How do persons with dementia participate in decision making related to health and daily care? A multi-case study BMC health services research. 2012;12:241.PubMed
20.
Moye J, Karel MJ, Gurrera RJ, Azar AR. Neuropsychological predictors of decision-making capacity over 9 months in mild-to-moderate dementia. J Gen Intern Med. 2006;21(1):78–83.PubMedPubMedCentral
21.
Nordhagen VKL, Sörlie V. Family carers’ experiences with municipal home care to people with dementia. Geriatrisk sykepleie. 2016;8(2):8–14.
22.
Mariani E, Vernooij-Dassen M, Koopmans R, Engels Y, Chattat R. Shared decision-making in dementia care planning: barriers and facilitators in two European countries. Aging Ment Health. 2017;21(1):31–9.PubMed
23.
Solli H, Hvalvik S, Bjork IT, Helleso R. Characteristics of the relationship that develops from nurse-caregiver communication during telecare. J Clin Nurs. 2015;24(13–14):1995–2004.PubMed
24.
Gethin-Jones S. Familial perceptions of the impact of outcome-focused homecare with older people experiencing dementia and living alone. Working with Older People. 2014;18(2):90–6.
25.
Gaugler JE. Family involvement in residential long-term care: a synthesis and critical review. Aging Ment Health. 2005;9(2):105–18.PubMedPubMedCentral
26.
Rognstad MK, Sagbakken M, Naden D. Family members' role as resources and collaborating partners: a study focusing on dementia and long-term stay in a nursing home. Nordic J Nurs Res. 2015;35(1):57–64.
27.
Hertzberg A, Ekman S-L. ‘We, not them and us?’ Views on the relationships and interactions between staff and relatives of older people permanently living in nursing homes. J Adv Nurs. 2000;31(3):614–22.PubMed
28.
29.
Banerjee A, Sanyal D. Dynamics of doctor-patient relationship: a cross-sectional study on concordance, trust, and patient enablement. J Fam Community Med. 2012;19(1):12–9.
30.
Lee RG, Garvin T. Moving from information transfer to information exchange in health and health care. Soc Sci Med. 2003;56(3):449–64.PubMed
31.
32.
33.
Bhandari H, Yasunobu K. What is social capital? A comprehensive review of the concept. Asian J Soc Sci. 2009;37(3):480–510.
34.
Collyer FM, Willis KF, Franklin M, Harley K, Short SD. Healthcare choice: Bourdieu’s capital, habitus and field. Curr Sociol. 2015;63(5):685–99.
35.
Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012;12:80.PubMedPubMedCentral
36.
Coyle J. Exploring the meaning of ‘dissatisfaction’ with health care: the importance of ‘personal identity threat’. Sociol Health Ill. 1999;21(1):95–123.
37.
Laparidou D, Middlemass J, Karran T, Siriwardena AN. Caregivers’ interactions with health care services – mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – a qualitative study. Dementia. 2018. https://​doi.​org/​10.​1177/​1471301217751226​. [cited Nov 29 2019].
38.
Jurgens FJ, Clissett P, Gladman JRF, Harwood RH. Why are family carers of people with dementia dissatisfied with general hospital care? A qualitative study. BMC Geriatrics. 2012;12:57.PubMedPubMedCentral
39.
Galvin J. The importance of family and caregiver in the care and management of people with Alzheimer's disease. Alzheimer's & Dementia. 2013;9(4, Suppl):P1–2.
40.
Bunn F, Burn AM, Robinson L, Poole M, Rait G, Brayne C, et al. Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals. BMJ Open. 2017;7(1):e013067.PubMedPubMedCentral
41.
Dahl E, van der Wel KA. Nordic health inequalities: patterns, trends, and policies. In: Smith K, Bambra C, Hill SE, editors. Health inequalities: critical perspectives. Oxford: Oxford University Press; 2015.
42.
43.
44.
45.
Patton MQ. Qualitative Research & Evaluation Methods. Los Angeles|London|New Delhi1Singapore|Washington DC: Sage Publications, Inc; 2015.
46.
Patton MQ. Sampling, qualitative (purposeful). Blackwell Encyclopedia Sociol. 2015.
47.
Palinkas LA, Horwitz SM, Ca G, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Admin Pol Ment Health. 2015;43(5):533–44.
48.
Ory MG, Hoffman IIIRR, Yee JL, Tennstedt S, Schulz R. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. The Gerontologist. 1999;39(2):177–86.PubMed
49.
Kitamura T, Tanimoto C, Oe S, Kitamura M, Hino S. Familial caregivers' experiences with home-visit nursing for persons with dementia who live alone. Psychogeriatrics. 2019;19(1):3–9.PubMed
50.
Greenwood N, Pound C, Brearley S, Smith R. A qualitative study of older informal carers' experiences and perceptions of their caring role. Maturitas. 2019;124:1–7.PubMedPubMedCentral
51.
Yu DSF, Cheng S-T, Wang J. Unravelling positive aspects of caregiving in dementia: an integrative review of research literature. Int J Nurs Stud. 2018;79:1–26.PubMed
52.
Sinclair C, Gersbach K, Hogan M, Bucks RS, Auret KA, Clayton JM, et al. How couples with dementia experience healthcare, lifestyle, and everyday decision-making. Int Psychogeriatr. 2018;30(11):1639–47.PubMed
53.
Kvale S, Brinkmann S. Det kvalitative forskningsintervju. 2nd ed. Oslo: Gyldendal Akademisk; 2012.
54.
Noy C. Sampling knowledge: The hermeneutics of snowball sampling in qualitative research. Int J Soc Res Methodol. 2008;11(4):327–44.
55.
Häikiö K, Sagbakken M, Rugkåsa J. Dementia and patient safety in the community: a qualitative study of family carers’ protective practices and implications for services. BMC Health Serv Res. 2019;19(1):635.PubMedPubMedCentral
56.
Kafle N. Hermeneutic phenomenological research method simplified. Bodhi: An Interdisciplinary J. 2013;5(1):181–200.
57.
Alvesson M, Sköldberg K. Reflexive methodology : new vistas for qualitative research. 2nd ed. London: Sage; 2009.
58.
Malterud K. Kvalitative metoder i medisinsk forsknig. En innføring. 3 ed. Oslo: Universitetsforlaget; 2011.
59.
Johannessen A, Tufte PA, Kristoffersen L. Introduksjon til samfunnsvitenskapelig metode. Oslo: Abstrakt; 2010. p. 436. s. : ill. p.
60.
Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London: Sage Publications; 2006.
61.
Fangen K. Deltagende observasjon. Oslo: Fagbokforlaget; 2010.
62.
Smart C. Personal life: new directions in sociological thinking. Cambridge: Polity; 2007.
63.
Dow B, Meyer C, Moore KJ, Hill KD. The impact of care recipient falls on caregivers. Aust health review. 2013;37(2):152–7.
64.
Ducharme F, Kergoat MJ, Antoine P, Pasquier F, Coulombe R. The unique experience of spouses in early-onset dementia. Am J Alzheimers Dis Other Dementias. 2013;28(6):634–41.
65.
Eliassen AH. Power relations and health care communication in older adulthood: dducating recipients and providers. The Gerontologist. 2016;56(6):990–6.PubMed
66.
Nimmon L, Stenfors-Hayes T. The “handling” of power in the physician-patient encounter: perceptions from experienced physicians. BMC Med Educ 2016;16(114).
67.
Finbråten HS. Measuring health literacy. Karlstad: Karlstad University Studies; 2018.
68.
Lundetrae K, Gabrielsen E. Relationship between literacy skills and self-reported health in the Nordic countries. Scandinavian journal of public health. 2016;44(8):758–64.PubMedPubMedCentral
69.
70.
Jansen T, Rademakers J, Waverijn G, Verheij R, Osborne R, Heijmans M. The role of health literacy in explaining the association between educational attainment and the use of out-of-hours primary care services in chronically ill people: a survey study. BMC Health Services Res. 2018;18(1):394.
71.
Batterham RW, Hawkins M, Collins PA, Buchbinder R, Osborne RH. Health literacy: applying current concepts to improve health services and reduce health inequalities. Public Health. 2016;132:3–12.PubMed
72.
Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155(2):97–107.PubMed
73.
Schütte S, Chastang J-F, Parent-Thirion A, Vermeylen G, Niedhammer I. Social differences in self-reported health among men and women in 31 countries in Europe. Scandinavian J Public Health. 2013;41(1):51–7.
74.
Efthymiou A, Middleton M, Charalambous A, Papastavrou E. The Association of Health Literacy and Electronic Health Literacy With Self-Efficacy, Coping, and Caregiving Perceptions Among Carers of People With Dementia. Reserach Protocol for a Descrptive Correlational Study. 2017;6(11) Available from: https://​www.​ncbi.​nlm.​nih.​gov/​pmc/​articles/​PMC5703980/​. [cited 2019 Nov 19].
75.
The Lancet N. Response to the growing dementia burden must be faster. The Lancet Neurology. 2018;17(8):651.
76.
Vaingankar JA, Chong SA, Abdin E, Picco L, Jeyagurunathan A, Zhang Y, et al. Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. Int Psychogeriatr. 2016;28(2):221–31.PubMed
77.
Sutcliffe C, Giebel C, Bleijlevens M, Lethin C, Stolt M, Saks K, et al. Caring for a person with dementia on the margins of long-term care: a perspective on burden from 8 European countries. J Am Med Dir Assoc. 2017;18(11):967–73 e1.PubMed
78.
Srivastava G, Tripathi RK, Tiwari SC, Singh B, Tripathi SM. Caregiver burden and quality of life of key caregivers of patients with dementia. Indian J Psychol Med. 2016;38(2):133–6.PubMedPubMedCentral
79.
Rosness TA, Haugen PK, Gausdal M, Gjøra L, Engedal K. Carers of patients with early-onset dementia, their burden and needs: a pilot study using a new questionnaire--care-EOD. International journal of geriatric psychiatry. 2012;27(10):1095.PubMed
80.
Annerstedt L, Elmstahl S, Ingvad B, Samuelsson SM. Family caregiving in dementia - an analysis of the caregiver's burden and the "breaking-point" when home care becomes inadequate. Scandinavian journal of public health. 2000;28(1):23–31.PubMed
81.
Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12(3):240–9.PubMed
82.
Bednarek A, Mojs E, Krawczyk-Wasielewska A, Glodowska K, Samborski W, Lisinski P, et al. Correlation between depression and burden observed in informal caregivers of people suffering from dementia with time spent on caregiving and dementia severity. Eur Rev Med Pharmacol Sci. 2016;20(1):59–63.PubMed
83.
Oliveira DC, Vass C, Aubeeluck A. The development and validation of the dementia quality of life scale for older family Carers (DQoL-OC). Aging Ment Health. 2018;22(5):709–16.PubMed
84.
Abdollahpour I, Nedjat S, Salimi Y, Noroozian M, Majdzadeh R. Which variable is the strongest adjusted predictor of quality of life in caregivers of patients with dementia? Psychogeriatrics. 2015;15(1):51–7.PubMed
85.
86.
87.
Beisecker nE. Patient power in doctor-patient communication: what do wi know? Health Commun. 1990;2(2):105–22.
Metadata
Title
Family carers’ involvement strategies in response to sub-optimal health services to older adults living with dementia – a qualitative study
Authors
Kristin Häikiö
Mette Sagbakken
Jorun Rugkåsa
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Geriatrics / Issue 1/2020
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-020-01663-z

Other articles of this Issue 1/2020

BMC Geriatrics 1/2020 Go to the issue

Research article

Translation and validation of the Dutch Pittsburgh Fatigability Scale for older adults

Research article

The construction of a conceptual framework explaining the relation between barriers to change of management of neuropsychiatric symptoms in nursing homes: a qualitative study using focus groups

Research article

Longitudinal trajectory of disability in community-dwelling older adults: An observational cohort study in South Korea

Research article

Individual and joint trajectories of change in bone, lean mass and physical performance in older men

Research article

Sarcopenia is associated with insomnia in Japanese older adults: a cross-sectional study of data from the Nagasaki Islands study

Research article

Clinical pictures, treatments, and resource use of norovirus gastroenteritis in long-term care facilities: a survey with a chart review in Japan

ACC 2024 Congress Coverage

Heart Failure Video

Year in Review: Heart failure and cardiomyopathies

Watch now

Watch this official video from ACC.24. Dr. Biykem Bozkurt discuss last year's major advances in heart failure and cardiomyopathies.

Semaglutide benefits people with type 2 diabetes and obesity-related heart failure

16-04-2024 Type 2 Diabetes News

Incentivised to exercise

11-04-2024 Lifestyle Modifications News

New intervention for STEMI-related cardiogenic shock

10-04-2024 Myocardial Infarction News

» View more highlights on the ACC 2024 congress hub page

Image Credits