Abstract
This study describes family caregivers’ experiences moving relatives with Alzheimer’s disease or related disorders (ADRD) from their homes to assisted living facilities (ALFs) and subsequently to memory care units (MCUs). We also examined how these experiences differed between caregiver dyad types, such as adult children caring for parents. In-depth interviews with 15 caregivers were transcribed verbatim. Grounded theory identified themes. Constant comparative analysis compared experiences of caregiver dyads. Most caregivers recognized the likely need for future specialized care at the time of the move to the ALF, but did not recall receiving information about transfer policies. The ALF move was harder for spouses, the MCU move for adult children. Assisted living facilities can improve support for caregivers facing a relative’s MCU transition through education about advantages of MCU placement and information about transfer policies. Support needs during transitions may differ between adult children and spouses.
Keywords: Alzheimer’s disease, assisted living, caregiving, dementia, memory care
Full Text
The Full Text of this article is available as a PDF (156.2 KB).
Contributor Information
Susan G. Kelsey, Department of Public Health Sciences, University of North Carolina at Charlotte, Charlotte, SC, USA, skelsey@hargray.com .
Sarah B. Laditka, Department of Public Health Sciences, University of North Carolina at Charlotte, Charlotte, SC, USA.
James N. Laditka, Department of Public Health Sciences, University of North Carolina at Charlotte, Charlotte, SC, USA.
References
- Alzheimer’s Association 2008. Alzheimer’s Disease Facts and Figures. Chicago: Alzheimer’s Association; 2008. [DOI] [PubMed] [Google Scholar]
- Hebert LE, Scherr PA, Bienias JL, Bennett DA, Evans DA Alzheimer’s disease in the U.S. population. Arch Neurol. 2003;60(8):1119-1122. [DOI] [PubMed] [Google Scholar]
- Alzheimer’s Association Statistics: About Alzheimer’s disease. Chicago: Alzheimer’s Association; 2003. [Google Scholar]
- Ory MG, Hoffman RR, Yee JL, Tennstedt S., Schulz R. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist. 1999;39(2): 177-185. [DOI] [PubMed] [Google Scholar]
- Kao HF, Travis SS, Acton GJ Relocation to a long-term care facility: working with patients and families before, during, and after. J Psychosocial Nurs. 2004;42(3):10-16. [DOI] [PubMed] [Google Scholar]
- Mollica R. State regulation update: states are adopting new rules at a brisk pace. Contemp Long Term Care. 1998; 21:45-49. [PubMed] [Google Scholar]
- South Carolina Department of Health and Environmental Control. Community Residential Care Facilities: DHEC Regulation 61-84, 2008. www.scdhec.net/health/licen/hrcrcf.pdf . Accessed July 19, 2008. [Google Scholar]
- South Carolina Department of Consumer Affairs. CCRC Directory; 2007. www.scconsumer.gov/licensing/ccrc/directory.htm . Accessed March 15, 2007. [Google Scholar]
- South Carolina Department of Health & Environmental Control. Nursing Homes, 2009. www.schec.gov/health/licen/hrnh.pdf . Accessed October 31, 2009. [Google Scholar]
- Kopetz S., Steele CD, Brandt J., et al. Characteristics and outcomes of dementia residents in an assisted living facility. Int J Geriatr Psychiatr. 2000;15(7):586-593. [DOI] [PubMed] [Google Scholar]
- Mollica R., Lamarche-Johnson H. State residential care and assisted living policy: 2004, 2005. http://aspe.hhs.gov/daltcp/reports/04alcom.htm. Accessed November 5, 2007. [Google Scholar]
- National Center for Assisted Living. Consumer information, 2009. www.ncal.org/consumer/index.cfm . Accessed February 4, 2009. [Google Scholar]
- Zimmerman S. , Gruber-Baldini AL, Sloane PD, et al. Assisted living and nursing homes: apples and oranges? Gerontologist. 2003;43(special issue 1):107-117. [DOI] [PubMed] [Google Scholar]
- Stocker KB, Silverstein NM Assisted living residences in Massachusetts: how ready and willing are they to serve people with Alzheimer’s disease and a related disorder? Am J Alzheim Dis. 1996;11(2):28-38. [Google Scholar]
- Hawes C., Phillips CD Defining quality in assisted living: comparing apples, oranges, and broccoli . Gerontologist. 2007;47(special issue III):40-50. [DOI] [PubMed] [Google Scholar]
- Mittelman MS , Ferris SH, Steinberg G., et al. An intervention that delays institutionalization of Alzheimer’s disease patients: treatment of spouse-caregivers. Gerontologist. 1993;33(6): 730-740. [DOI] [PubMed] [Google Scholar]
- Yaffe K., Fox P., Newcomer R., et al. Patient and caregiver characteristics and nursing home placement in patients with dementia. J Am Med Assoc. 2002;287(16):2090-2097. [DOI] [PubMed] [Google Scholar]
- Aud MA Residents with dementia in assisted living facilities: the role of behavior in discharge decisions. J Gerontol Nurs. 2004. ;30(6):16-26. [DOI] [PubMed] [Google Scholar]
- Shippee TP "But I am not moving": residents’ perspectives on transitions within a continuing care retirement community. Gerontologist. 2009;49(3):418-427. [DOI] [PubMed] [Google Scholar]
- Reuss GF, Dupuis SL, Whitfield K. Understanding the experience of moving a loved one to a long-term care facility: Family members’ perspectives. J Gerontol Social Work . 2005;46(1): 17-46. [DOI] [PubMed] [Google Scholar]
- Rosenberg PB , Mielke MM, Samus QM, et al. Transition to nursing home from assisted living is not associated with dementia or dementia-related problem behaviors . J Am Med Directors Assoc. 2006;7(2):73-78. [DOI] [PubMed] [Google Scholar]
- Ball MM, Perkins MM, Whittington FJ, et al. Managing decline in assisted living: the key to aging in place . J Gerontol Social Sci. 2004;59B(4):S202-S212. [DOI] [PubMed] [Google Scholar]
- Aud MA Interactions of behavior and environment as contributing factors in the discharge of residents with dementia from assisted living facilities. J Housing Elderly. 2002;16(1/2):61-82. [Google Scholar]
- Mead LC, Eckert JK, Zimmerman S., Schumacher JG Sociocultural aspects of transitions from assisted living for residents with dementia. Gerontologist. 2005;45(special issue 1):115-123. [DOI] [PubMed] [Google Scholar]
- Frank J. How long can I stay? The dilemma of aging in place in assisted living. J Housing Elderly. 2001;15(1/2):5-30. [Google Scholar]
- Utz RL Assisted living: the philosophical challenges of everyday practice. J Appl Gerontol. 2003;22(3):379-404. [Google Scholar]
- Munroe DJ, Guihan M. Provider dilemmas with relocation in assisted living: philosophy vs. practice . J Aging Social Policy. 2005;17(3):19-37. [DOI] [PubMed] [Google Scholar]
- Kemp CL Negotiating transitions in later life: married couples in assisted living . J Appl Gerontol. 2008;27(3):231-251. [Google Scholar]
- Kelsey SG, Laditka SB, Laditka JN Transitioning dementia residents from assisted living to memory care units: a pilot study. Am J Alzheim Dis Oth Dement. 2008;23(4):355-362. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kelsey SG, Laditka SB, Laditka JN Dementia and transitioning from assisted living to memory care units: perspectives of administrators in three facility types. Gerontologist. 2009; doi: 10.1093/ geront/gnp115. [DOI] [PubMed] [Google Scholar]
- Nolan M., Dellasega C. ‘I really feel I’ve let him down’: Supporting family carers during long-term care placement for elders. J Adv Nurs. 2000;31(4):759-767. [DOI] [PubMed] [Google Scholar]
- U.S. Census Bureau. Current lists of metropolitan and micropolitan statistical areas and definitions, 2007. www.census.gov/population/www./estimates/metro_general/2007/List4.txt . Accessed June 29, 2008. [Google Scholar]
- Strauss A., Corbin J. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Thousand Oaks, CA: SAGE; ; 1998. [Google Scholar]
- Luborsky MR The identification and analysis of themes and patterns. In: Gubrium JF, Sankar A, eds. Qualitative Methods in Aging Research. Thousand Oaks, CA: SAGE; 1994:189-210. [Google Scholar]
- Miles MB, Huberman AM Qualitative Data Analysis: An Expanded Sourcebook. 2nd ed. Thousand Oaks, CA: SAGE; 1994. [Google Scholar]
- Glaser B., Strauss A. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine De Gruyter; 1967. . [Google Scholar]
- Patton MQ Qualitative Evaluation and Research Methods. 2nd ed. Newbury Park, CA: SAGE; 1990. [Google Scholar]
- Lincoln Y., Guba E. Naturalistic Inquiry. Beverly Hills, CA: SAGE; 1985. [Google Scholar]
- Zimmerman S. , Sloane PD, Williams CS, et al. Dementia care and quality of life in assisted living and nursing homes. Gerontologist. 2005;45(special issue 1):133-146. [DOI] [PubMed] [Google Scholar]
- Ott CH, Sanders S., Kelber ST Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer’s disease and related dementias. Gerontologist. 2008;47(6):798-809. [DOI] [PubMed] [Google Scholar]
- Mahoney DF Vigilance. Evolution and definition for caregivers of family members with Alzheimer’s disease. J Gerontol Nurs. 2003;29(8):24-30. [DOI] [PubMed] [Google Scholar]
- Mittelman MS, Ferris SH, Shulman E., et al. A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist. 1995;35(6):792-802. [DOI] [PubMed] [Google Scholar]
- Nolan M., Walker G., Nolan J., et al. Entry to care: positive choice or fait accompli? Developing a more proactive nursing response to the needs of older people and their carers . J Adv Nurs. 1996; 24:265-274. [DOI] [PubMed] [Google Scholar]
- Moore J. Determining sample size. Qualit Health Res. 2000; 10(1):3-5. [Google Scholar]
- Kelsey SG, Laditka SB Evaluating the roles of professional geriatric care managers in maintaining the quality of life for older Americans. J Gerontol Social Work. 2009;52(3): 261-276. [DOI] [PubMed] [Google Scholar]