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Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners

Published online by Cambridge University Press:  06 February 2019

Lyndsey M. Miller Open the ORCID record for Lyndsey M. Miller [Opens in a new window] ,
Jeffrey A. Kaye ,
Karen S. Lyons ,
Christopher S. Lee ,
Carol J. Whitlatch  and
Michael S. Caserta
Lyndsey M. Miller*
Affiliation:
Department of Neurology, Layton Aging & Alzheimer’s Disease Center, Oregon Health & Science University, Portland, OR, USA School of Nursing, Oregon Health & Science University, Portland, OR, USA
Jeffrey A. Kaye
Affiliation:
Department of Neurology, Layton Aging & Alzheimer’s Disease Center, Oregon Health & Science University, Portland, OR, USA
Karen S. Lyons
Affiliation:
William F. Connell School of Nursing, Boston College, Chestnut Hill, MA, USA
Christopher S. Lee
Affiliation:
William F. Connell School of Nursing, Boston College, Chestnut Hill, MA, USA
Carol J. Whitlatch
Affiliation:
Center for Research and Education, Benjamin Rose Institute on Aging, Cleveland, OH, USA
Michael S. Caserta
Affiliation:
College of Nursing & Center on Aging, The University of Utah, Salt Lake City, UT, USA
*
Correspondence should be addressed to: Lyndsey M. Miller, Oregon Health & Science University, School of Nursing, 3455 SW US Veterans Hospital Road, Portland, OR 97239, USA. Phone: (503) 494-3837; Fax: (503) 494-7499. Email: [email protected].
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Abstract

Background and Purpose:

The impact of dementia-related stressors and strains have been examined for their potential to threaten the well-being of either the person with dementia or the family care partner, but rarely have studies considered the dyadic nature of well-being in dementia. The purpose of this study was to examine the dyadic effects of multiple dimensions of strain on the well-being of dementia care dyads.

Methods:

Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer’s Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale).

Results:

In adjusted models, the PWD’s well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad’s relationship. The CP’s well-being was associated with significantly less care-related strain and (for QOL scale) less relationship strain.

Conclusions:

Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad’s relationship quality.

Keywords

quality-of-lifedepressionfamily caregivingdyadic analysisdementiaStress Process Model
Type
Original Research Article
Information
International Psychogeriatrics , Volume 31 , Issue 5: Issue Theme: Well-Being in Dementia , May 2019 , pp. 617 - 626
Copyright
© International Psychogeriatric Association 2019 

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References

Arthur, P. B., Gitlin, L. N., Kairalla, J. A. and Mann, W. C. (2018). Relationship between the number of behavioral symptoms in dementia and caregiver distress: what is the tipping point? International Psychogeriatrics, 30, 1099–1107.CrossRefGoogle ScholarPubMed
Barnett, R. C., Marshall, N. L., Raudenbush, S. W. and Brennan, R. T. (1993). Gender and the relationship between job experiences and psychological distress: a study of dual-earner couples. Journal of Personality and Social Psychology, 64, 794–806.CrossRefGoogle ScholarPubMed
Braun, M., Scholz, U., Bailey, B., Perren, S., Hornung, R. and Martin, M. (2009). Dementia caregiving in spousal relationships: a dyadic perspective. Aging and Mental Health, 13, 426–436.CrossRefGoogle ScholarPubMed
Buckley, T., et al. (2012). Predictors of quality of life ratings for persons with dementia simultaneously reported by patients and their caregivers: the Cache County (Utah) Study. International Psychogeriatrics, 24, 1094–1102.CrossRefGoogle ScholarPubMed
Conde-Sala, J. L., Garre-Olmo, J., Turro-Garriga, O., Lopez-Pousa, S. and Vilalta-Franch, J. (2009). Factors related to perceived quality of life in patients with Alzheimer’s disease: the patient’s perception compared with that of caregivers. International Journal of Geriatric Psychiatry, 24, 585–594.CrossRefGoogle ScholarPubMed
Cunningham, N. A., Cunningham, T. R., Roberston, J. M. and Heyn, P. C. (2018). Understanding and Measuring the Wellbeing of Carers of People With Dementia. The Gerontologist.CrossRefGoogle ScholarPubMed
Dawson, N. T., Powers, S. M., Krestar, M., Yarry, S. J. and Judge, K. S. (2013). Predictors of self-reported psychosocial outcomes in individuals with dementia. The Gerontologist, 53, 748–759.CrossRefGoogle ScholarPubMed
Fauth, E., et al. (2012). Caregivers’ relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers’ physical health and psychological well-being. Aging and Mental Health, 16, 699–711.CrossRefGoogle ScholarPubMed
Fillenbaum, G. G., Heyman, A., Wilkinson, W. E. and Haynes, C. S. (1987). Comparison of two screening tests in Alzheimer’s disease. The correlation and reliability of the Mini-Mental State Examination and the modified Blessed test. Archives of Neurology, 44, 924–927.CrossRefGoogle ScholarPubMed
Folstein, M. F., Folstein, S. E. and Mchugh, P. R. (1975). “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.CrossRefGoogle ScholarPubMed
Gellert, P., Häusler, A., Gholami, M., Rapp, M., Kuhlmey, A. and Nordheim, J. (2018). Own and partners’ dyadic coping and depressive symptoms in individuals with early-stage dementia and their caregiving partners. Aging and Mental Health, 22, 1008–1016.CrossRefGoogle ScholarPubMed
Häusler, A., Sánchez, A., Gellert, P., Deeken, F., Rapp, M. A. and Nordheim, J. (2016). Perceived stress and quality of life in dementia patients and their caregiving spouses: does dyadic coping matter? International Psychogeriatrics, 28, 1857–1866.CrossRefGoogle ScholarPubMed
Judge, K. S., Menne, H. L. and Whitlatch, C. J. (2010). Stress Process Model for individuals with dementia. The Gerontologist, 50, 294–302.CrossRefGoogle ScholarPubMed
Karimi, M. and Brazier, J. (2016). Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics, 34, 645–649.CrossRefGoogle ScholarPubMed
Kaufmann, E. G. and Engel, S. A. (2016). Dementia and well-being: a conceptual framework based on Tom Kitwood’s model of needs. Dementia (London), 15, 774–788.CrossRefGoogle Scholar
Logsdon, R. G., Gibbons, L. E., Mccurry, S. M. and Teri, L. (1999). Quality of life in Alzheimer’s disease: patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32.Google Scholar
Logsdon, R. G., Gibbons, L. E., Mccurry, S. M. and Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510–519.CrossRefGoogle ScholarPubMed
Logsdon, R. G., Gibbons, L. E., Mccurry, S. M. and Teri, L. (2005). Assessing changes in quality of life in Alzheimer’s disease. In: Vellas, B., Grundman, M., Feldman, H., Fitten, L. J., Winblad, B. and Giacobini, E. (eds.) Research and Practice in Alzheimer’s Disease and Cognitive Decline. New York: Springer Publications.Google Scholar
Lyons, K. S. and Lee, C. S. (2018). The Theory of Dyadic Illness Management. Journal of Family Nursing, 24, 8–28.CrossRefGoogle ScholarPubMed
Mitchell, A. J. (2009). A meta-analysis of the accuracy of the mini-mental state examination in the detection of dementia and mild cognitive impairment. Journal of Psychiatric Research, 43, 411–431.CrossRefGoogle ScholarPubMed
Moon, H., Townsend, A., Whitlatch, C. J. and Dilworth-Anderson, P. (2017). Quality of life for dementia caregiving dyads: effects of incongruent perceptions of everyday care and values. The Gerontologist, 57, 657–666.Google ScholarPubMed
Nagpal, N., Heid, A. R., Zarit, S. H. and Whitlatch, C. J. (2015). Religiosity and quality of life: a dyadic perspective of individuals with dementia and their caregivers. Aging & Mental Health, 19, 500–506.CrossRefGoogle ScholarPubMed
Orgeta, V., Orrell, M., Hounsome, B., Woods, B. and REMCARE team (2015). Self and carer perspectives of quality of life in dementia using the QoL-AD. International Journal of Geriatric Psychiatry, 30, 97–104.CrossRefGoogle ScholarPubMed
Pearlin, L. I., Mullan, J. T., Semple, S. J. and Skaff, M. M. (1990). Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist, 30, 583–594.CrossRefGoogle ScholarPubMed
Pfeifer, L., Drobetz, R., Fankhauser, S., Mortby, M. E., Maercker, A. and Forstmeier, S. (2013). Caregiver rating bias in mild cognitive impairment and mild Alzheimer’s disease: impact of caregiver burden and depression on dyadic rating discrepancy across domains. International Psychogeriatrics, 25, 1345–1355.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Radloff, L. S. (1977). The CES-D scale: a self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.CrossRefGoogle Scholar
Raudenbush, S. W., Bryk, A. S. and Congdon, R. (2011). HLM for Windows, 7 edn. Skokie, IL: Scientific Software International, Inc.Google Scholar
Schulz, R., Savla, J., Czaja, S. J. and Monin, J. (2017). The role of compassion, suffering, and intrusive thoughts in dementia caregiver depression. Aging & Mental Health, 21, 997–1004.CrossRefGoogle ScholarPubMed
Sebern, M. D. and Whitlatch, C. J. (2007). Dyadic relationship scale: a measure of the impact of the provision and receipt of family care. The Gerontologist, 47, 741–751.CrossRefGoogle ScholarPubMed
StataCorp (2017). Stata Statistical Software: Release 15. 14 ed. College Station, TX: StataCorp LP.Google Scholar
Stites, S. D., Karlawish, J., Harkins, K., Rubright, J. D. and Wolk, D. (2017). Awareness of mild cognitive impairment and mild Alzheimer’s disease dementia diagnoses associated with lower self-ratings of quality of life in older adults. The Journals of Gerontology: Series B, 72, 974–985.CrossRefGoogle ScholarPubMed
Stuckey, J. C., Neundorfer, M. M. and Smyth, K. A. (1996). Burden and well-being: the same coin or related currency? The Gerontologist, 36, 686–693.CrossRefGoogle ScholarPubMed
Thomas, P. A., Liu, H., Umberson, D. and Suitor, J. J. (2017). Family relationships and well-being. Innovation in Aging, 1, igx025.CrossRefGoogle ScholarPubMed
Tombaugh, T. M. and Mcintyre, N. J. (1992). The mini-mental state examination: a comprehensive review. Journal of the American Geriatrics Society, 40, 922–935.CrossRefGoogle ScholarPubMed
Tyack, C. and Camic, P. M. (2017). Touchscreen interventions and the well-being of people with dementia and caregivers: a systematic review. International Psychogeriatrics, 29, 1261–1280.CrossRefGoogle ScholarPubMed
Werner, P. (2014). Stigma and Alzheimer’s disease: a systematic review of evidence, theory, and methods. In: Corrigan, P. W. (Ed.), The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. Washington, DC: American Psychological Association.Google Scholar