This study identifies how persons with dementia and their caregiving spouses individually perceive their own, their spouse's and their mutual engagements in everyday activities. Fifty-two cohabiting spouses, half of whom were diagnosed with dementia, were interviewed. A qualitative constant comparative analysis was performed, identifying four major themes: perceived changes in activity engagements; consequences of experienced changes; dilemmas experienced by the caregivers; and management approaches to handle a changed everyday life. Each individual described their activities to include loss of social engagements and changes in the relationship. Dilemmas experienced by the caregivers included `interfering with the spouse's engagement or not' and `placing the spouse's or one's own needs first'. The caregiver management approaches identified included `taking over' or `encouraging initiative'; `lowering demands or avoiding problematic engagements'; and `managing through collaboration'. Findings provide insight into everyday engagements for persons with dementia and their caregivers, important to healthcare support providers.
Almberg, B., Grafström, M., & Winblad, B. (1997). Major strain and coping strategies as reported by family members who care for aged demented relatives. Journal of Advanced Nursing, 26, 683-691.
2.
American Psychiatric Association. (2001). Diagnostic and statistical manual of mental disorders. (Rev. 5th ed.). Washington DC: APA.
3.
Beeson, R.A. (2003). Loneliness and depression in spousal caregivers of those with Alzheimer's disease versus non-caregiving spouses. Arch Psych Nurs, 17, 135-143.
4.
Bond, J., & Corner, L. (2001). Researching dementia: Are there unique methodological challenges for health services research? Ageing and Society , 21, 95-116.
5.
Bonner, A.P., & O'Brien Cousins, S. (1996). Exercise and Alzheimer's disease: Benefits and barriers. Active Adaptive Aging, 20, 21-34.
6.
Butcher, H.K., Holkup, P.A., & Buckwalter, K.C. (2001). The experience of caring for a family member with Alzheimer's disease. West J Nurs , 23, 33-35.
7.
Christiansen, C.H. (1999). Defining lives: Occupation as identity: An essay on competence, coherence, and the creation of meaning. American Journal of Occupational Therapy, 53, 547-558.
8.
Covinsky, K.E., Newcome, R., Fox, P., Wood, J., Sands, L., Dane, K., & Yaffe K. (2003). Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Intern Med, 18, 1006-1014.
9.
Efraimsson, E., Höglund, I., & Sandman, P-O. (2001). The everlasting trial of strength and patience: Transitions in home care nursing as narrated by patients and family members . Journal of Clinical Nursing, 10, 813-819.
10.
Farran, C.J., Loukissa, D., Perraud, S., & Paun, O. (2003). Alzheimer's disease caregiving information and skills. Part 1: Care recipient issues and concerns. Research in Nursing & Health, 26, 366-375.
11.
Farran, C.J., Miller, B.H., Kaufman, J.E., Donner, E., & Fogg, L. (2001). Finding meaning through caregiving: Development of an instrument for family caregivers of persons with Alzheimer's disease . Journal of Clinical Psychology, 55, 1107-1125.
12.
Finlay, L. (2004). The practice of psychosocial occupational therapy . (3rd ed.) London: Nelson Thornes.
13.
Folstein, M.F., Folstein, S.E., & McHugh, P.R. (1975). Minimental state examination. A practical method for grading the cognitive state of patients for the clinician . J Psychiatr Res, 12, 189-198.
14.
Gräsel, E., Wiltfang, J., & Kronhuber, J. (2003). Non-drug therapies for dementia: An overview of the current situation with regard to proof of effectiveness. Dementia and Geriatric Cognitive Disorders, 15, 115-125.
15.
Hellström, I., Nolan, M., & Lund, U. (2005). `We do things together': A case study of `couplehood' in dementia. Dementia, 4, 7-22.
16.
Jansson, W., Nordberg, G., & Grafström, M. (2001). Patterns of elderly spousal caregiving in dementia care: An observational study. Journal of Advanced Nursing , 34, 804-812.
17.
Josephsson, S., Bäckman, L., Borell, L., Bernspång, B., Nygård, L., & Rönnberg, L. (1993). Supporting everyday activities in dementia: An intervention study. International Journal of Geriatric Psychiatry , 8, 395-400.
18.
Josephsson, S., Bäckman, L., Nygård, L., & Borell, L. (2000). Non-professional caregivers' experience of occupational performance on the part of relatives with dementia: Implications for caregiver program in occupational therapy. Scandinavian Journal of Occupational Therapy, 7, 61-66.
19.
Kielhofner, G. (2002). A model of human occupation: Theory and application . (3rd ed.). MD: Lippincott Williams & Wilkins.
20.
Kitwood, T. (1997). Dementia reconsidered - the person comes first. Buckingham: Open University Press .
21.
Kvale, S. (1996). Interviews. Thousand Oaks, CA: SAGE.
22.
Lyons, K.S., Zarit, S.H., Sayer, A.G., & Whitlach, C.J. (2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver. Journal of Gerontology: Psychological Sciences, 57, 195-204.
23.
Miller, P.A., & Butin, D. (2000). The role of occupational therapy in dementia - C.O.P.E. (Caregiver options for practical experiences). International Journal of Gerontological Psychiatry, 15, 86-89.
24.
Nygård, L., & Öhman, A. (2001). Managing changes in everyday occupations: The experience of persons with Alzheimer's disease. OTJR: Occupation, Participation and Health, 22, 70-81.
25.
Ory, M.G., Hoffman, R.R., Yee, J.L., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. Gerontologist , 39, 177-185.
26.
Phinney, A. (2006). Family strategies for supporting involvement in meaningful activity by persons with dementia. J Fam Nurs, 12, 80-101.
27.
Schulz, R. (Ed.). (2000). Handbook on dementia caregiving: Evidence-based interventions in family caregiving . Heidelberg: Springer.
28.
Spencer, A. (2001). Ageing through occupation. Asian Journal of Occupational Therapy, 1, 15-21.
29.
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA: SAGE.
30.
Van't Leven, N., & Jonsson, H. (2002). Doing and being in the atmosphere of the doing: Environmental influences on occupational performances in a nursing home. Scandinavian Journal of Occupational Therapy, 9, 148-155.
31.
Vikström, S., Borell, L., Stigsdotter-Neely, A., & Josephsson, S. (2005). Caregivers' self-initiated support towards their spouses with dementia when performing an everyday occupation together at home. OTJR: Occupation, Participation and Health , 25, 149-159.
32.
Wells, D., Dawson, P., Sidani, S., Craig, D., & Pringle, D. (2000). Effects of an abilities-focused program of morning care on residents who have dementia and on caregivers. J Am Geriatr Soc, 48, 442-449.
33.
Wilcock, A.A. (Ed.). (1998). An occupational perspective of health. Thorofare, NJ: SLACK.
34.
Woods, B. (1999). Promoting well-being and independence for people with dementia. Int J Geriatr Psychiatry, 14, 97-109.
35.
Ziff, S.M., & Shaffner, A.R. (2000). Occupational therapy student research of the needs and characteristics of dementia caregivers. Physical & Occupational Therapy in Geriatrics, 17, 29-40.
