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Published in: BMC Geriatrics 1/2019

Open Access 01-12-2019 | Care | Research article

My husband is not ill; he has memory loss - caregivers´ perspectives on health care services for persons with dementia

Authors: Randi Granbo, Elisabeth Boulton, Ingvild Saltvedt, Jorunn L. Helbostad, Kristin Taraldsen

Published in: BMC Geriatrics | Issue 1/2019

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Abstract

Background

To explore informal caregivers’ perspectives and perceived needs related to health care services/activities for older adults with dementia, in order to understand barriers and facilitators to participation. The study represents a first step, and explores challenges to overcome, in order to design new activities and services adapted to older adults with dementia.

Methods

We used a qualitative approach where eight caregivers of people with a dementia diagnosis were included. We recruited participants from a counselling service centre, for home dwelling people with dementia and their families, in a Norwegian municipality. We transcribed data from two focus group interviews and completed analyses by use of Systematic Text Condensation method.

Results

The findings indicate that current health care services for people with dementia do not meet the needs of either the people with dementia or their caregivers. The few activities/services offered are characterised by passivity and lack of individual and personalised care. Existing health care services and new activities should consider each individual’s resources, interests, and physical function to ensure that both people with dementia and their caregivers want to accept support.

Conclusions

To develop health care services and activities for people with dementia, participation and involvement from both people with dementia and their caregivers is necessary. People with dementia are more than their diagnosis. Future health care providers have to widen their focus and consider the individual person with dementia.
Literature
2.
go back to reference Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20(8):423–8.PubMed Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20(8):423–8.PubMed
3.
go back to reference Lilly MB, Robinson CA, Holtzman S, Bottorff JL. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health Soc Care Community. 2012;20(1):103–12.PubMed Lilly MB, Robinson CA, Holtzman S, Bottorff JL. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health Soc Care Community. 2012;20(1):103–12.PubMed
4.
go back to reference Torti FM Jr, Gwyther LP, Reed SD, Friedman JY, Schulman KA. A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord. 2004;18(2):99–109.PubMed Torti FM Jr, Gwyther LP, Reed SD, Friedman JY, Schulman KA. A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord. 2004;18(2):99–109.PubMed
5.
go back to reference Parker D, Mills S, Abbey J. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. Int J Evid Based Healthc. 2008;6(2):137–72.PubMed Parker D, Mills S, Abbey J. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. Int J Evid Based Healthc. 2008;6(2):137–72.PubMed
6.
go back to reference Rimmer E, Wojciechowska M, Stave C, Sganga A, O'Connell B. Implications of the facing dementia survey for the general population, patients and caregivers across Europe. Int J Clin Pract Suppl. 2005;(146):17–24. Rimmer E, Wojciechowska M, Stave C, Sganga A, O'Connell B. Implications of the facing dementia survey for the general population, patients and caregivers across Europe. Int J Clin Pract Suppl. 2005;(146):17–24.
7.
go back to reference Roen I, Selbaek G, Kirkevold O, Engedal K, Testad I, Bergh S. Resourse use and disease Couse in dementia - nursing home (REDIC-NH), a longitudinal cohort study; design and patient characteristics at admission to Norwegian nursing homes. BMC Health Serv Res. 2017;17(1):365.PubMedPubMedCentral Roen I, Selbaek G, Kirkevold O, Engedal K, Testad I, Bergh S. Resourse use and disease Couse in dementia - nursing home (REDIC-NH), a longitudinal cohort study; design and patient characteristics at admission to Norwegian nursing homes. BMC Health Serv Res. 2017;17(1):365.PubMedPubMedCentral
8.
go back to reference Vossius C, S G, Ydstebø AE, Benth JS, Godager G, Lurås H, et al. Ressursbruk og sykdomsforløp ved demens (REDIC): Alderspsykiatrisk forskningssenter, Sykehuset Innlandet; 2015. Vossius C, S G, Ydstebø AE, Benth JS, Godager G, Lurås H, et al. Ressursbruk og sykdomsforløp ved demens (REDIC): Alderspsykiatrisk forskningssenter, Sykehuset Innlandet; 2015.
9.
go back to reference Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60.PubMed Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60.PubMed
10.
go back to reference Pinquart M, Sorensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr. 2006;18(4):577–95.PubMed Pinquart M, Sorensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr. 2006;18(4):577–95.PubMed
12.
go back to reference Bieber A, Stephan A, Verbeek H, Verhey F, Kerpershoek L, Wolfs C, et al. Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formal care. Z Gerontol Geriatr. 2018;51(5):530–6.PubMed Bieber A, Stephan A, Verbeek H, Verhey F, Kerpershoek L, Wolfs C, et al. Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formal care. Z Gerontol Geriatr. 2018;51(5):530–6.PubMed
13.
go back to reference McCabe M, You E, Tatangelo G. Hearing their voice: a systematic review of dementia family Caregivers' needs. Gerontologist. 2016;56(5):e70–88.PubMed McCabe M, You E, Tatangelo G. Hearing their voice: a systematic review of dementia family Caregivers' needs. Gerontologist. 2016;56(5):e70–88.PubMed
14.
go back to reference Macdonald M, Martin-Misener R, Helwig M, Weeks L, MacLean H. Experiences of unpaid family/friend caregivers of community-dwelling adults with dementia: a systematic review protocol. JBI Database System Rev Implement Rep. 2017;15(5):1298–305.PubMed Macdonald M, Martin-Misener R, Helwig M, Weeks L, MacLean H. Experiences of unpaid family/friend caregivers of community-dwelling adults with dementia: a systematic review protocol. JBI Database System Rev Implement Rep. 2017;15(5):1298–305.PubMed
15.
go back to reference Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Admin Pol Ment Health. 2015;42(5):533–44. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Admin Pol Ment Health. 2015;42(5):533–44.
16.
go back to reference Wilkinson S, Joffe H, Yardley L. Qualitative Data Collection Interviews and Focus Groups. Marks DF, Yardley L, editors. London sage: sage; 2004. Wilkinson S, Joffe H, Yardley L. Qualitative Data Collection Interviews and Focus Groups. Marks DF, Yardley L, editors. London sage: sage; 2004.
17.
go back to reference Herrmann C. International experiences with the hospital anxiety and depression scale--a review of validation data and clinical results. J Psychosom Res. 1997;42(1):17–41.PubMed Herrmann C. International experiences with the hospital anxiety and depression scale--a review of validation data and clinical results. J Psychosom Res. 1997;42(1):17–41.PubMed
18.
go back to reference Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.PubMed Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.PubMed
19.
go back to reference Greene JG, Smith R, Gardiner M, Timbury GC. Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: a factor analytic study. Age Ageing. 1982;11(2):121–6.PubMed Greene JG, Smith R, Gardiner M, Timbury GC. Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: a factor analytic study. Age Ageing. 1982;11(2):121–6.PubMed
20.
go back to reference Ulstein I, Wyller TB, Engedal K. High score on the relative stress scale, a marker of possible psychiatric disorder in family carers of patients with dementia. Int J Geriatr Psychiatry. 2007;22(3):195–202.PubMed Ulstein I, Wyller TB, Engedal K. High score on the relative stress scale, a marker of possible psychiatric disorder in family carers of patients with dementia. Int J Geriatr Psychiatry. 2007;22(3):195–202.PubMed
22.
go back to reference Morgan DL. Focus groups as qualitative research: Sage Publications; 1997. Morgan DL. Focus groups as qualitative research: Sage Publications; 1997.
23.
go back to reference Bryman A. Social research Methods. New York: Oxford University Press; 2004. Bryman A. Social research Methods. New York: Oxford University Press; 2004.
24.
go back to reference Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health. 2012;40(8):795–805.PubMed Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health. 2012;40(8):795–805.PubMed
26.
go back to reference Lincoln YSGEG. Naturalistic inquiry. Newbury Park CA: sage publications; 1985. Lincoln YSGEG. Naturalistic inquiry. Newbury Park CA: sage publications; 1985.
27.
go back to reference Brooker D. What is person-centred care in dementia? Rev Clin Gerontol. 2003;13:215–22. Brooker D. What is person-­centred care in dementia? Rev Clin Gerontol. 2003;13:215–22.
28.
go back to reference van Alphen HJ, Hortobagyi T, van Heuvelen MJ. Barriers, motivators, and facilitators of physical activity in dementia patients: a systematic review. Arch Gerontol Geriatr. 2016;66:109–18.PubMed van Alphen HJ, Hortobagyi T, van Heuvelen MJ. Barriers, motivators, and facilitators of physical activity in dementia patients: a systematic review. Arch Gerontol Geriatr. 2016;66:109–18.PubMed
Metadata
Title
My husband is not ill; he has memory loss - caregivers´ perspectives on health care services for persons with dementia
Authors
Randi Granbo
Elisabeth Boulton
Ingvild Saltvedt
Jorunn L. Helbostad
Kristin Taraldsen
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Geriatrics / Issue 1/2019
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-019-1090-6

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