Dementia in relation to family caregiver involvement and burden in long-term care

Lauren W Cohen, Sheryl Zimmerman, David Reed, Philip D Sloane, Anna S Beeber, Tiffany Washington, John G Cagle, Lisa P Gwyther, Lauren W Cohen, Sheryl Zimmerman, David Reed, Philip D Sloane, Anna S Beeber, Tiffany Washington, John G Cagle, Lisa P Gwyther

Abstract

To better understand the process and outcomes of family involvement for long-term care residents with varying stages of dementia, we analyzed family and staff data for 467 residents of 24 residential care/assisted living and nursing-home settings. Adjusted analyses found that although the amount of family visitation did not significantly vary by resident cognitive status (15 versus 20 visits/month to persons with and without dementia, respectively), the nature of the visit did. Families of cognitively intact residents spent more time in activities related to social and community engagement, such as taking residents on trips and calling and writing letters (p<.001), while families of more impaired residents spent more time on care-related activities, including tasks related to nutrition (p<.027), mobility (p=.001), and discussing care with staff (p=.007), the latter of which was associated with greater burden (p<.001). Staff identified similar patterns but perceived less family involvement.

Keywords: burden; dementia; family caregiver; involvement; long-term care.

© The Author(s) 2013.

References

    1. Abrahamson K, Suitor JJ, Pillemer K. Conflict between nursing home staff and residents’ families: Does it increase burnout? J Aging Health. 2009;21(6):895–912.
    1. Berdes C, Eckert JM. The language of caring: Nurse’s aides’ use of family metaphors conveys affective care. Gerontologist. 2007;47(3):340–349.
    1. Bitzan JE, Kruzich JM. Interpersonal relationships of nursing home residents. Gerontologist. 1990;30(3):385–390.
    1. Bowers B. Family perceptions of care in a nursing home. Gerontologist. 1988;28(3):361–368.
    1. Dempsey NP, Pruchno RA. The family’s role in the nursing home: Predictors of technical and non-technical assistance. J Gerontol Soc Work. 1993;21:127–145.
    1. Dobbs D, Montgomery R. Family satisfaction with residential care provision: A multilevel analysis. J Appl Gerontol. 2005;24(5):453–474.
    1. Dobbs D, Munn J, Zimmerman S, Boustani M, Williams CS, Sloane PD, Reed PS. Characteristics associated with lower activity involvement in long-term care residents with dementia. Gerontologist. 2005;45(Special Issue 1):81–86.
    1. Friedemann ML, Montgomery RJ, Maiberger B, Smith AA. Family involvement in the nursing home: Family-oriented practices and staff-family relationships. Res Nurs Health. 1997;20:527–537.
    1. Gaugler JE, Anderson KA, Zarit SH, Pearlin LI. Family involvement in nursing homes: Effects on stress and well-being. Aging Ment Health. 2004;8:65–75.
    1. Gaugler JE, Kane RL. Families and assisted living. Gerontologist. 2007;47(Suppl 1):83–99.
    1. Givens JL, Lopez RP, Mazor KM, Mitchell SL. Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer Dis Assoc Disord. 2012;26(3):254–259.
    1. Greene VL, Monahan DJ. The impact of visitation on patient well-being in nursing homes. Gerontologist. 1982;22(4):418–423.
    1. Hartmaier SL, Sloane PD, Guess HA, Koch GG. The MDS Cognition Scale: A valid instrument for identifying and staging nursing home residents with dementia using the Minimum Data Set. J Am Geriatr Soc. 1994;42:1173–1179.
    1. Hopp FB. Patterns and predictors of formal and informal care among elderly persons living in board and care homes. Gerontologist. 1999;39:167–176.
    1. Koren MJ. Person-centered care for nursing home residents: the culture-change movement. Health Affairs. 2010;29(2):312–317.
    1. Lawton MP, Brody EM. Assessment of older people: Self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9:179–186.
    1. Levy-Storms L, Miller-Martinez D. Family caregiver involvement and satisfaction with institutional care during the 1st year after admission. J Appl Gerontol. 2005;24(2):160–174.
    1. Lipsitz SR, Kim K, Zhao L. Analysis of repeated categorical data using generalized estimating equations. Stat Med. 1994;13:1149–1163.
    1. Maas ML, Reed D, Park M, Specht JP, Schutte D, Kelley LS, Buckwalter KC. Outcomes of family involvement in care intervention for caregivers of individuals with dementia. Nurs Res. 2004;53(2):76–86.
    1. Majerovitz SD, Mollett RJ, Rudder C. We’re on the same side: improving communication between nursing home and family. Health Commun. 2009;1:12–20.
    1. Mitchell JM, Kemp BJ. Quality of life in assisted living homes: A multidimensional analysis. J Gerontol B Psychol Sci Soc Sci. 2000;55B(2):P117–P127.
    1. Morris JN, Fries BE, Morris S. Scaling ADLs within the MDS. J Gerontol A Biol Sci Med Sci. 1999;54A:M546–M553.
    1. Murphy KM, Moris S, Kiely D, Morris JN, Belleville-Taylor P, Gwyther L. Family involvement in special care units. In: Holmes D, Teresi JA, Ory M, editors. Research and Practices in Alzheimer’s Disease, (RAPD), Special Care Units, Vol 4. New York: Springer Publishing Company; 2000. pp. 229–239.
    1. Natan MB. Coordinating the roles of nursing home staff and families of elderly nursing home residents. J Nurs Care Qual. 2009;4:332–339.
    1. Pillemer K, Suitor JJ, Henderson CR, Meador R, Schultz L, Robison J, Hegeman C. A cooperative communication intervention for nursing home staff and family members of residents. Gerontologist. 2003;43(2):96–106.
    1. Port CL, Gruber-Baldini AL, Burton L, Baumgarten M, Hebel JR, Zimmerman S, Magaziner J. Resident contact with family and friends following nursing home admission. Gerontologist. 2001;41:589–596.
    1. Port CL, Zimmerman S, Williams CS, Dobbs D, Preisser JS, Williams S. Families filling the gap: comparing family involvement for assisted living and nursing home residents with dementia. Gerontologist. 2005;45(Special Issue I):87–95.
    1. Ryan AA, Scullion HF. Family and staff perceptions of the role of families in nursing homes. J Adv Nurs. 2000;32(3):626–634.
    1. Tornatore JB, Grant LA. Burden among family caregivers of persons with Alzheimer’s disease in nursing homes. Gerontologist. 2002;42:497–506.
    1. Whitlatch CJ, Schur D, Noelker LS, Ejaz FK, Looman WJ. The stress process of family caregiving in institutional settings. Gerontologist. 2001;41(4):462–473.
    1. Williams SW, Williams CS, Zimmerman S, Munn J, Dobbs D, Sloane PD. Emotional and physical health of informal caregivers of residents at the end of life: The role of social support. J Gerontol B Psychol Sci Soc Sci. 2008;63B(3):S171–S183.
    1. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly, correlates of feelings of burden. Gerontologist. 1980;20:649–655.
    1. Zarit SH, Antony CR, Boutselis M. Interventions with caregivers of dementia patients: Comparisons of two approaches. Psychol Aging. 1987;2:225–232.
    1. Zimmerman S, Gruber-Baldini AL, Hebel R, Sloane PD, Magaziner J. Nursing home facility risk factors for infection and hospitalization: Importance of registered nurse turnover, administration, and social factors. J Am Geriatr Soc. 2002;50:1987–1995.
    1. Zimmerman S, Sloane PD, Eckert JK, Buie VC, Walsh JF, Hebel JR, et al. An overview of the Collaborative Studies of Long-term Care. In: Zimmerman S, Sloane PD, Eckert JK, editors. Assisted living: Needs, practices, and policies in residential care for the elderly. Baltimore, MD: The Johns Hopkins University Press; 2001. pp. 117–143.
    1. Zimmerman S, Sloane PD, Williams CS, Reed PS, Preisser JS, Eckert JK, Boustani M, Dobbs D. Dementia care and quality of life in assisted living and nursing homes. Gerontologist. 2005;45(Special Issue I):133–146.
    1. Zimmerman S, Sloane PD, Williams CW, Dobbs D, Ellajosyula R, Braaten A, Rupnow MFT, Kaufer DI. Residential care/assisted living staff may detect undiagnosed dementia using the Minimum Data Set Cognition scale. J Am Geriatr Soc. 2007;55:1349–1355.

Source: PubMed

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