Top

Gepubliceerd in:

15-08-2022

The impact of care–recipient relationship type on health-related quality of life in community-dwelling older adults with dementia and their informal caregivers

Auteurs: Aiping Lai, Julie Richardson, Lauren Griffith, Ayse Kuspinar, Jenna Smith-Turchyn

Gepubliceerd in: Quality of Life Research | Uitgave 12/2022

Abstract

Purpose

To assess whether there was an association between care–recipient relationship type and health-related quality of life (HRQL) of older persons living with dementia (PLWD) and their informal caregivers, and whether this association was affected by PLWD’ dementia severity.

Methods

This was a secondary data analysis study. PLWD (n = 1230) and caregivers (n = 1871) were identified from participants in the National Health and Aging Trends Study (NHATS) Round 5 and the National Study of Caregiving (NSOC) II, respectively. A series of bivariate and multivariable regression models examined the associations among relationship type and HRQL in PLWD and caregivers, adjusted for socio-demographic variables and dementia severity.

Results

PLWD and caregivers’ HRQL outcomes varied by relationship type. PLWD cared for by an adult–child caregiver, or multiple caregivers experienced higher functional limitations than those cared for by a spousal caregiver (β = .79, CI [.39, 1.19]; β = .50, CI [.17, .82], respectively). “Other” caregivers, such as extended family members or friends, had lower odds of experiencing negative emotional burden and social strain than spousal caregivers (β = .79, CI [.39, 1.19]; β = .50, CI [.17, .82], respectively). Lower odds of experiencing negative emotional burden were also found with multiple caregivers. The effect of an adult–child caregiver on social strain was no longer significant when the dementia severity of PLWD was included in the analysis.

Conclusion

The type of care–recipient relationship impacts the HRQL in both PLWD and their informal caregivers. Dementia severity of the PLWD appears to affect this association.

vorige artikel Swallowing and quality of life in individuals with Marfan syndrome: a cross-sectional study

volgende artikel Health-related quality of life in long-term Caribbean prostate cancer survivors: comparisons with prostate cancer-free men

Alleen toegankelijk voor geautoriseerde gebruikers

World Health Organization. (2021). Dementia. Retrieved February 5, 2022, from https://www.who.int/news-room/fact-sheets/detail/dementia

Cross, A. J., Garip, G., & Sheffield, D. (2018). The psychosocial impact of caregiving in dementia and quality of life: A systematic review and meta-synthesis of qualitative research. Psychology & Health, 33(11), 1321–1342. https://doi.org/10.1080/08870446.2018.1496250CrossRef

Alzheimer’s Association. (2021). Alzheimer’s disease Facts and Figures. Alzheimer’s Dement, 17(3), 36.

International Society for Quality of Life Research. (2015). Dictionary of quality of life and health outcomes measurement. Milwaukee: ISOQOL, Nancy Mayo.

Fagerström, C., Elmståhl, S., & Wranker, L. S. (2020). Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: A cross-sectional cohort study. Health and Quality of Life Outcomes, 18, 79. https://doi.org/10.1186/s12955-020-01321-3CrossRefPubMedPubMedCentral

WHO. (2001). International classification of functioning, disability and health. WHO.

Cieza, A., & Stucki, G. (2005). Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Quality of Life Research, 14(5), 1225–1237. https://doi.org/10.1007/s11136-004-4773-0CrossRefPubMed

Cieza, A., Bickenbach, J., & Chatterji, S. (2008). The ICF as a conceptual platform to specify and discuss health and health-related concepts. Das Gesundheitswesen, 70(10), e47-56. https://doi.org/10.1055/s-2008-1080933CrossRefPubMed

Logsdon, R. G., McCurry, S. M., & Teri, L. (2007). Evidence-based interventions to improve quality of life for individuals with Dementia. Alzheimer’s Care Today, 8(4), 309–318. https://doi.org/10.1097/01.ALCAT.0000297152.12774.9dCrossRefPubMedPubMedCentral

10.

Zucchella, C., Bartolo, M., Bernini, S., Picascia, M., & Sinforiani, E. (2015). Quality of life in Alzheimer disease a comparison of patients’ and caregivers’ points of view. Alzheimer Disease and Associated Disorders, 29(1), 50–54. https://doi.org/10.1097/WAD.0000000000000050CrossRefPubMed

11.

Farina, N., Page, T. E., Daley, S., Brown, A., Bowling, A., Basset, T., Livingston, G., Knapp, M., Murray, J., & Banerjee, S. (2017). Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimer’s & Dementia, 13(5), 572–581. https://doi.org/10.1016/j.jalz.2016.12.010CrossRef

12.

Smolcic, E., Mavandadi, S., Streim, J. E., & Oslin, D. W. (2016). The association between caregiver-care recipient relationship and caregiver burden and depressive symptoms among community-dwelling older adults with dementia. AAGP Annual Meeting. https://doi.org/10.1016/j.jagp.2016.01.105CrossRef

13.

Lingler, J. H., Sherwood, P. R., Crighton, M. H., Song, M. K., & Happ, M. B. (2008). Conceptual challenges in the study of caregiver-care recipient relationships. Nursing Research, 57(5), 367–372. https://doi.org/10.1097/01.NNR.0000313499.99851.0cCrossRefPubMedPubMedCentral

14.

Namkung, E. H., Greenberg, J. S., & Mailick, M. R. (2017). Well-being of sibling caregivers: Effects of kinship relationship and race. The Gerontologist, 57(4), 626–636. https://doi.org/10.1093/geront/gnw008CrossRefPubMed

15.

Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine, Schulz, R., & Eden, J. (2016). Families Caring for an Aging America. National Academies Press US.

16.

Morrison, B., Phillips, B. N., Jones, J. E., Przybelski, R., & Huck, G. (2019). The impact of risk and resistance factors on quality of life in caregivers of individuals with dementia. Clinical Gerontologist, 43(5), 585–597. https://doi.org/10.1080/07317115.2019.1572039CrossRefPubMed

17.

Viñas-Diez, V., Turró-Garriga, O., Portellano-Ortiz, C., Gascón-Bayarri, J., Reñé-Ramírez, R., Garre-Olmo, J., & Conde-Sala, J. L. (2017). Kinship and cohabitation in relation to caregiver burden in the context of Alzheimer’s disease: A 24-month longitudinal study. International Journal of Geriatric Psychiatry, 32, e72–e82. https://doi.org/10.1002/gps.4656CrossRefPubMed

18.

Rigby, T., Ashwill, R. T., Johnson, D. K., & Galvin, J. E. (2019). Differences in the experience of caregiving between spouse and adult child caregivers in dementia with Lewy Bodies. Innovation in Aging, 3(3), 1–15. https://doi.org/10.1093/geroni/igz027CrossRef

19.

Söylemez, B. A., Küçükgüçlü, Ö., Akyol, M. A., & Isik, A. T. (2020). Quality of life and factors affecting it in patients with Alzheimer’s disease: A cross-sectional study. Health and Quality of Life Outcomes, 18, 304. https://doi.org/10.1186/s12955-020-01554-2CrossRef

20.

Santos, R. L., Sousa, M. F., Simões-Neto, J. P., Nogueira, M. L., Belfort, T. T., Torres, B., Rosa, R. D., Laks, J., & Dourado, M. C. (2014). Caregivers’ quality of life in mild and moderate dementia. Arquivos de Neuro-Psiquiatria, 72(12), 931–937. https://doi.org/10.1590/0004-282X20140155CrossRefPubMed

21.

National Health and Aging Trends Study. Produced and distributed by https://www.nhats.org with funding from the National Institute on Aging (grant number NIA U01AG32947)

22.

Hunt, L. J., Covinsky, K. E., Yaffe, K., Stephens, C. E., Miao, Y., Boscardin, W. J., & Smith, A. K. (2015). Pain in community-dwelling older adults with dementia: Results from the National Health and Aging Trends Study. Journal of the American Geriatrics Society, 63(8), 1503–1511. https://doi.org/10.1111/jgs.13536CrossRefPubMedPubMedCentral

23.

Schwartz, R. M., Ornstein, K. A., Liu, B., Alpert, N., Bevilacqua, K. G., & Taioli, E. (2019). Change in quality of life after a cancer diagnosis among a nationally representative cohort of older adults in the US. Cancer Investigation, 37(7), 299–310. https://doi.org/10.1080/07357907.2019.1645160CrossRefPubMedPubMedCentral

24.

Mayo, N. E., Poissant, L., Ahmed, S., Finch, L., Higgins, J., Salbach, N. M., Soicher, J., & Jaglal, S. (2004). Incorporating the International Classification of functioning, disability, and health (ICF) into an electronic health record to create indicators of function: Proof of concept using the SF-12. Journal of the American Medical Informatics Association: JAMIA, 11(6), 514–522. https://doi.org/10.1197/jamia.M1462CrossRefPubMedPubMedCentral

25.

Lu, Z., MacDermid, J. C., & Rosenbaum, P. (2020). A narrative review and content analysis of functional and quality of life measures used to evaluate the outcome after TSA: An ICF linking application. BMC Musculoskeletal Disorders, 21, 228. https://doi.org/10.1186/s12891-020-03238-wCrossRefPubMedPubMedCentral

26.

Dong, L., Freedman, V. A., & Mendes De Leon, C. F. (2020). The association of comorbid depression and anxiety symptoms with disability onset in older adults HHS Public Access. Psychosomatic Medicine, 82(2), 158–164. https://doi.org/10.1097/PSY.0000000000000763CrossRefPubMedPubMedCentral

27.

Cook, S. K., Snellings, L., & Cohen, S. A. (2018). Socioeconomic and demographic factors modify observed relationship between caregiving intensity and three dimensions of quality of life in informal adult children caregivers. Health and Quality of Life Outcomes, 16(1), 169. https://doi.org/10.1186/s12955-018-0996-6CrossRefPubMedPubMedCentral

28.

Cohen, S. A., Cook, S. K., Sando, T. A., Brown, M. J., & Longo, D. R. (2017). Socioeconomic and demographic disparities in caregiving intensity and quality of life in informal caregivers a first look at the National Study of caregiving. Journal of Gerontological Nursing, 43(6), 17–24. https://doi.org/10.3928/00989134-20170224-01CrossRefPubMed

29.

Freedman, V. A., Skehan, M. E., Hu, M., Wolff, J., & Kasper, J. D. (2019). National Study of Caregiving I-III User Guide. Johns Hopkins Bloomberg School of Public Health.

30.

Defrin, R., Amanzio, M., De Tommaso, M., Dimova, V., Filipovic, S., Finn, D. P., Gimenez-Llort, L., Invitto, S., Jensen-Dahm, C., Lautenbacher, S., Oosterman, J. M., Petrini, L., Pick, C. G., Pickering, G., Vase, L., & Kunz, M. (2015). Experimental pain processing in individuals with cognitive impairment: Current state of the science. Pain, 156(8), 1396–1408. https://doi.org/10.1097/j.pain.0000000000000195CrossRefPubMed

31.

Waite, L. J., & Hughes, M. E. (1999). At risk on the cusp of old age: living arrangements and functional status among black, white and Hispanic adults. The Journals of Gerontology Series B, Psychological Sciences and Social Sciences, 54(3), S136–S144. https://doi.org/10.1093/geronb/54b.3.s136CrossRefPubMed

32.

Kasper, J. D., Freedman, V. A., & Spillman, B. (2013). Classification of persons by Dementia status in the National Health and Aging Trends Study. Technical Paper #5. Johns Hopkins University School of Public Health.

33.

StataCorp. (2019). Stata Statistical Software: Release 16. StataCorp LLC.

34.

Evans, B. C., Coon, D. W., Belyea, M. J., & Ume, E. (2017). Collective care: Multiple caregivers and multiple care recipients in Mexican American families. Journal of Transcultural Nursing: Official Journal of the Transcultural Nursing Society, 28(4), 398–407. https://doi.org/10.1177/1043659616657878CrossRef

35.

Ma, L. (2020). Depression, anxiety, and apathy in mild cognitive impairment: Current perspectives. Frontiers in Aging Neuroscience, 12, 1–8. https://doi.org/10.3389/fnagi.2020.00009CrossRef

36.

Gonda, X., Pompili, M., Serafini, G., Carvalho, A. F., Rihmer, Z., & Dome, P. (2015). The role of cognitive dysfunction in the symptoms and remission from depression. Annals of general psychiatry, 14, 27. https://doi.org/10.1186/s12991-015-0068-9CrossRefPubMedPubMedCentral

37.

Kim, B. J., Liu, L., Cheung, C., & Ahn, J. (2018). Effects of cognitive impairment and functional limitation on depressive symptoms among community-dwelling older Korean immigrants in the U.S. PLoS ONE, 13(3), e0193092. https://doi.org/10.1371/journal.pone.0193092CrossRefPubMedPubMedCentral

38.

Parmelee, P. A., Smith, B., & Katz, I. R. (1993). Pain complaints and cognitive status among elderly institution residents. Journal of the American Geriatrics Society, 41, 517–522. https://doi.org/10.1111/j.1532-5415.1993.tb01888.xCrossRefPubMed

39.

Docking, R. E., Fleming, J., Brayne, C., Zhao, J., Macfarlane, G. J., Jones, G. T., Cambridge City over-75s Cohort (CC75C) study collaboration. (2014). Pain reporting in older adults: The influence of cognitive impairment—Results from the Cambridge City >75 Cohort study. British Journal of Pain, 8(3), 119–124. https://doi.org/10.1177/2049463714527437CrossRefPubMedPubMedCentral

40.

Huffman, J. C., & Kunik, M. E. (2000). Assessment and understanding of pain in patients with dementia. The Gerontologist, 40, 574–581. https://doi.org/10.1093/geront/40.5.574CrossRefPubMed

41.

Penning, M. J., & Wu, Z. (2015). Caregiver stress and mental health: Impact of caregiving relationship and gender. The Gerontologist, 56(6), 1102–1113. https://doi.org/10.1093/geront/gnv038CrossRefPubMed

42.

Marks, N. F., Lambert, J. D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64(3), 657–667. https://doi.org/10.1111/j.1741-3737.2002.00657.xCrossRef

43.

Chiao, C. Y., Wu, H. S., & Hsiao, C. Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340–350. https://doi.org/10.1111/inr.12194CrossRefPubMed

44.

Pinquart, M., & Sörensen, S. (2011). Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison. Psychology and Aging, 26(1), 1–14. https://doi.org/10.1037/a0021863CrossRefPubMedPubMedCentral

45.

Oldenkamp, M., Hagedoorn, M., Slaets, J., Stolk, R., Wittek, R., & Smidt, N. (2016). Subjective burden among spousal and adult-child informal caregivers of older adults: Results from a longitudinal cohort study. BMC Geriatrics, 16(1), 1–11. https://doi.org/10.1186/s12877-016-0387-yCrossRef

46.

Lindeza, P., Rodrigues, M., Costa, J., Guerreiro, M., & Rosa, M. M. (2020). Impact of dementia on informal care: A systematic review of family caregivers’ perceptions. BMJ Supportive & Palliative Care. https://doi.org/10.1136/bmjspcare-2020-002242CrossRef

47.

Quinn, C., & Toms, G. (2019). Influence of positive aspects of Dementia caregiving on caregivers’ well-being: A systematic review. The Gerontolgist, 59(5), e584–e596. https://doi.org/10.1093/geront/gny168CrossRef

48.

NHATS Data Collection Procedures: Round 5 (2015) https://www.nhats.org. Funded by the National Institute on Aging (U01AG032947)

Titel: The impact of care–recipient relationship type on health-related quality of life in community-dwelling older adults with dementia and their informal caregivers
Auteurs: Aiping Lai
Julie Richardson
Lauren Griffith
Ayse Kuspinar
Jenna Smith-Turchyn
Publicatiedatum: 15-08-2022
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 12/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-022-03203-1

Andere artikelen Uitgave 12/2022

The patient-reported outcomes measurement information systems (PROMIS®) physical function and its derivative measures in adults: a systematic review of content validity

Review

Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms

Discussion on the assessment of functioning in people under 18 years of age

Letter to the Editor

Measurement properties of the Dutch PROMIS-29 v2.1 profile in people with and without chronic conditions

Open Access

Oral health-related quality of life in children with celiac disease

Comparing patient global impression of severity and patient global impression of change to evaluate test–retest reliability of depression, non-small cell lung cancer, and asthma measures

Open Access

Bohn Stafleu van Loghum

Welkom bij Scalda & Bohn Stafleu van Loghum

Registreer

Login

The impact of care–recipient relationship type on health-related quality of life in community-dwelling older adults with dementia and their informal caregivers

Abstract

Purpose

Methods

Results

Conclusion

Andere artikelen Uitgave 12/2022

The patient-reported outcomes measurement information systems (PROMIS®) physical function and its derivative measures in adults: a systematic review of content validity

Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms

Discussion on the assessment of functioning in people under 18 years of age

Measurement properties of the Dutch PROMIS-29 v2.1 profile in people with and without chronic conditions

Oral health-related quality of life in children with celiac disease

Comparing patient global impression of severity and patient global impression of change to evaluate test–retest reliability of depression, non-small cell lung cancer, and asthma measures

Bohn Stafleu van Loghum

Welkom bij Scalda & Bohn Stafleu van Loghum

Registreer

Login

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusion

Log in om toegang te krijgen

The patient-reported outcomes measurement information systems (PROMIS®) physical function and its derivative measures in adults: a systematic review of content validity

Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms

Discussion on the assessment of functioning in people under 18 years of age

Measurement properties of the Dutch PROMIS-29 v2.1 profile in people with and without chronic conditions

Oral health-related quality of life in children with celiac disease

Comparing patient global impression of severity and patient global impression of change to evaluate test–retest reliability of depression, non-small cell lung cancer, and asthma measures