Health> Vol.5 No.8, August 2013

Relatives’ experiences of everyday life when receiving day care services for persons with dementia living at home

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ABSTRACT

Relatives often become involved in the care of people with dementia who are living at home. The caregivers’ burdens are extensively described in several studies, and one of the most common, unmet needs of the caregivers is the opportunity for daytime activities. The aim in this qualitative study is therefore to explore the everyday lives of eight relatives of people with dementia who are receiving day care services. A content analysis is used, and three major themes emerge and are discussed: 1) when life becomes chaotic; 2) rebuilding a new, everyday life; and 3) the agonies of choice. The findings indicate that day care service offers respite care, and, at the same time, it gives both the relatives and those with dementia a meaningful day. These findings can also be described as relatives traveling a route from a situation characterized by chaos and suffering to a new life situation that has meaning through day care services. It is important to note that despite this new meaning in the relatives’ lives, the relatives continue to struggle with decisions about the futures of their loves ones in regard to the dilemma of placing them in an institution versus aging in place.

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Cite this paper

Solum Myren, G. , Enmarker, I. , Saur, E. and Hellzen, O. (2013) Relatives’ experiences of everyday life when receiving day care services for persons with dementia living at home. Health, 5, 1227-1235. doi: 10.4236/health.2013.58166.

References

[1] Alzheimer’s Association (2012) Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 8, 131-168. doi:10.1016/j.jalz.2012.02.001
[2] O’Connell B, Hawkins, M., Ostaszkiewicz, J. and Millar, L. (2012) Careers’ perspectives of respite care in Australia: An evaluative study. Contemporary Nurse: A Journal for the Australian Nursing Profession, 41, 111-119.
[3] Glemsk (2007) Men ikke glemt! Om dagens situasjon og framtidas utfordringer for a styrke tjenestetilbudet til personer med demens. Sosialog helsedirektoratet. Avdeling omsorg og tannhelse, Oslo.
[4] Demensplan 2015 (2007) Helseogomsorgs departement et, Oslo.
[5] Zank, S. and Schacke, C. (2002) Evaluation of geriatric day care units: Effects on patients and caregivers. Journals of Gerontology Series B: Psychological Sciences & Social Sciences, 57B, 348. doi:10.1093/geronb/57.4.P348
[6] Chumbler, N.R., Grimm, J.W., Cody, M. and Beck, C. (2003) Gender, kinship and caregiver burden: The case of community-dwelling memory impaired seniors. International Journal of Geriatric Psychiatry, 18, 722-732. doi:10.1002/gps.912
[7] Andrén, S. and Elmstahl, S. (2008) The relationship between caregiver burden, caregivers’ perceived health and their sense of coherence in caring for elders with dementia. Journal of Clinical Nursing, 17, 790-799. doi:10.1111/j.1365-2702.2007.02066.x
[8] Watts, J.H. and Teitelman, J. (2005) Achieving a restorative mental break for family caregivers of persons with Alzheimer's disease. Australian Occupational Therapy Journal, 52, 282-292. doi:10.1111/j.1440-1630.2005.00524.x
[9] Kim, H., Chang, M., Rose, K. and Kim, S. (2012) Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing, 68, 846-855. doi:10.1111/j.1365-2648.2011.05787.x
[10] Beaudreau, S.A., Spira, A.P., Gray, H.L., Depp, C.A., Long, J., Rothkopf, M. and Gallagher-Thompson, D. (2008) The Relationship between objectively measured sleep disturbance and dementia family caregiver distress and burden. Journal of Geriatric Psychiatry & Neurology, 21, 159-165. doi:10.1177/0891988708316857
[11] Brodaty, H., Green, A. and Koschera, A. (2003) Metaanalysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51, 657-664. doi:10.1034/j.1600-0579.2003.00210.x
[12] Van Den Wijngaart, M.A.G., Vernooij-Dassen, M.J.F.J. and Felling, A.J.A. (2007) The influence of stressors, appraisal and personal conditions on the burden of spousal caregivers of persons with dementia. Aging & Mental Health, 11, 626-636. doi:10.1080/13607860701368463
[13] Miranda-Castillo, C., Woods, B. and Orrell, M. (2013) The needs of people with dementia living at home from user, caregiver and professional perspectives: A crosssectional survey. BMC Health Services Research, 13, 43. doi:10.1186/1472-6963-13-43
[14] De Bruin, S.R., Oosting, S.J., Tobi, H., Blauw, Y.H., Schols, J.M. and De Groot, C.P. (2010) Day care at green care farms: A novel way to stimulate dietary intake of community-dwelling older people with dementia? Journal of Nutrition Health & Aging, 14, 352-357. doi:10.1007/s12603-010-0079-9
[15] Gústafsdóttir, M. (2011) Beneficial care approaches in specialized daycare units for persons with dementia. American Journal of Alzheimer’s Disease & Other Dementias, 26, 240-246. doi:10.1177/1533317511402315
[16] Bruin, S.R.D., Oosting, S.J., Kuin, Y., Hoefnagels, E.C.M., Blauw, Y.H., Groot, L.C.P.G.M.D. and Schols, J.M.G.A. (2009) Green care farms promote activity among elderly people with dementia. Journal of Housing for the Elderly, 23, 368-389. doi:10.1080/02763890903327275
[17] Kvale, S. (2007) Doing interviews. SAGE, Los Angeles.
[18] Patton, M.Q. (2002) Qualitative research & evaluation methods.
[19] Granskar, M. and Hoglund-Nielsen, B. (2012) Tillampad kvalitativ forskning inom halsooch sjukvard. Studentlitteratur, Lund.
[20] Graneheim, U.H. and Lundman, B. (2004) Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105-112. doi:10.1016/j.nedt.2003.10.001
[21] Sandelowski, M. (1994) We are the stories we tell: Narrative knowing in nursing practice. Journal of Holistic Nursing, 12, 23-33. doi:10.1177/089801019401200105
[22] Oliver, P. (2010) The student’s guide to research ethics. Open University Press, Maidenhead.
[23] Golden, M.A., Whaley, B.B. and Stone, A.M. (2012) “The system is beginning to shut down”: Utilizing caregivers’ metaphors for dementia, persons with dementia, and caregiving. Applied Nursing Research, 25, 146-151. doi:10.1016/j.apnr.2011.02.001
[24] Doka, K.J. (2010) Grief, multiple loss and dementia. Bereavement Care, 29, 15-20. doi:10.1080/02682621.2010.522374
[25] Betts Adams, K., McClendon, M.J. and Smyth, K.A. (2008) Personal losses and relationship quality in dementia caregiving. Dementia, 7, 301-319. doi:10.1177/1471301208093286
[26] Etters, L., Goodall, D. and Harrison, B.E. (2008) Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423-428. doi:10.1111/j.1745-7599.2008.00342.x
[27] Willyard, J., Miller, K., Shoemaker, M. and Addison, P. (2008) Making sense of sibling responsibility for family caregiving. Qualitative Health Research, 18, 1673-1686. doi:10.1177/1049732308327195
[28] Quinn, C., Clare, L. and Woods, R.T. (2010) The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: A systematic review. International Psychogeriatrics, 22, 43-55. doi:10.1017/S1041610209990810
[29] Moyle, W., Kellett, U., Ballantyne, A. and Gracia, N. (2011) Dementia and loneliness: An Australian perspective. Journal of Clinical Nursing, 20, 1445-1453. doi:10.1111/j.1365-2702.2010.03549.x
[30] Gústafsdóttir, M. (2011) Beneficial care approaches in specialized daycare units for persons with dementia. American Journal of Alzheimer’s Disease and Other Dementias, 26, 240-246. doi:10.1177/1533317511402315
[31] de la Cuesta-Benjumea, C. (2011) Strategies for the relief of burden in advanced dementia care-giving. Journal of Advanced Nursing, 67, 1790-1799. doi:10.1111/j.1365-2648.2010.05607.x
[32] Lund, D.A., Utz, R., Caserta, M.S. and Wright, S.D. (2009) Examining what caregivers do during respite time to make respite more effective. Journal of Applied Gerontology, 28, 109-131. doi:10.1177/0733464808323448
[33] Menne, H.L., Johnson, J.D., Whitlatch, C.J. and Schwartz, S.M. (2012) Activity preferences of persons with dementia. Activities, Adaptation & Aging, 36, 195-213. doi:10.1080/01924788.2012.696234
[34] Ducharme, F., Couture, M. and Lamontagne, J. (2012) Decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Services Quarterly, 31, 197-218. doi:10.1080/01621424.2012.681572
[35] Bern-Klug, M. (2008) The emotional context facing nursing home residents’ families: A call for role reinforcement strategies from nursing homes and the community. Journal of the American Medical Directors Association, 9, 36-44. doi:10.1016/j.jamda.2007.08.010
[36] Davies, S. and Nolan, M. (2004) “Making the move”: Relatives’ experiences of the transition to a care home. Health & Social Care in the Community, 12, 517-526. doi:10.1111/j.1365-2524.2004.00535.x
[37] Butcher, H.K., Holkup, P.A., Park, M. and Maas, M. (2001) Thematic analysis of the experience of making a decision to place a family member with Alzheimer’s disease in a special care unit. Research in Nursing & Health, 24, 470-480. doi:10.1002/nur.10005
[38] Elliott, B.A., Gessert, C.E. and Peden-McAlpine, C. (2009) Family decision-making in advanced dementia: Narrative and ethics. Scandinavian Journal of Caring Sciences, 23, 251-258. doi:10.1111/j.1471-6712.2008.00613.x
[39] Eriksson, K., Olsson, K.A. Peterson, C.I. and Zetterlund, J.E. (2006) The suffering human being. Nordic Studies Press, Chicago.
[40] Andrén, S. and Elmstahl, S. (2005) Family caregivers’ subjective experiences of satisfaction in dementia care: Aspects of burden, subjective health and sense of coherence. Scandinavian Journal of Caring Sciences, 19, 157-168. doi:10.1111/j.1471-6712.2005.00328.x
[41] Shim, B. Barroso, J. and Davis, L.L. (2012) A comparative qualitative analysis of stories of spousal caregivers of people with dementia: Negative, ambivalent, and positive experiences. International Journal of Nursing Studies, 49, 220-229. doi:10.1016/j.ijnurstu.2011.09.003
[42] Frankl, V.E. (1969) The will to meaning: Foundations and applications of logotheraphy. World Publishing Company, New York.
[43] Logstrup, K.E. (1997) The ethical demand. University of Notre Dame Press, Notre Dame. http://www.fhi.no/eway/default.aspx?
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