Hostname: page-component-848d4c4894-8kt4b Total loading time: 0 Render date: 2024-06-15T03:29:52.508Z Has data issue: false hasContentIssue false
  • English
  • Français

Dementia caregiver burdens predict overnight hospitalization and hospice utilization

Published online by Cambridge University Press:  20 October 2022

Suzanne S. Sullivan Open the ORCID record for Suzanne S. Sullivan [Opens in a new window] ,
Cristina de Rosa Open the ORCID record for Cristina de Rosa [Opens in a new window] ,
Chin-Shang Li Open the ORCID record for Chin-Shang Li [Opens in a new window]  and
Yu-Ping Chang Open the ORCID record for Yu-Ping Chang [Opens in a new window]
Suzanne S. Sullivan*
Affiliation:
School of Nursing, University at Buffalo, Buffalo, NY, USA
Cristina de Rosa
Affiliation:
School of Nursing, University at Buffalo, Buffalo, NY, USA
Chin-Shang Li
Affiliation:
School of Nursing, University at Buffalo, Buffalo, NY, USA
Yu-Ping Chang
Affiliation:
School of Nursing, University at Buffalo, Buffalo, NY, USA
*
Author for correspondence: Suzanne S. Sullivan, School of Nursing, University at Buffalo, 3435 Main Street, 201A Wende Hall, Buffalo, NY 14214, USA. Email: suzanney@buffalo.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

To determine sociodemographics and caregiver burdens associated with overnight hospitalization, hospice utilization, and hospitalization frequency among persons with dementia (PWD).

Methods

Cross-sectional analysis of PWD (n = 899) of the National Health and Aging Trends Study linked to the National Study of Caregiving. Logistic and proportional odds regression determined the effects of caregiver burdens on overnight hospitalization, hospice use, and hospitalization frequency. Differences between PWD alive not-alive groups were compared on overnight hospitalization and frequency.

Results

Alive PWD (n = 804) were 2.36 times more likely to have an overnight hospital stay (p = 0.004) and 1.96 times more likely to have multiple hospitalizations when caregivers found it physically difficult to provide care (p = 0.011). Decedents aged 65–74 (n = 95) were 4.55 times more likely to experience overnight hospitalizations than 85+, hospitalizations were more frequent (odds ratio [OR] = 4.84), and there was a significant difference between PWD alive/not alive groups (p = 0.035). Decedents were 5.60 times more likely to experience an overnight hospitalization when their caregivers had financial difficulty, hospitalizations were more frequent when caregivers had too much to handle (OR = 8.44) and/or no time for themselves (OR = 10.67). When caregivers had no time for themselves, a significant difference between alive/not alive groups (p = 0.018) was detected in hospitalization frequency. PWD whose caregivers had emotional difficulty helping were 5.89 times more likely to utilize hospice than caregivers who did not report emotional difficulty.

Significance of results

Care transitions among PWD at the end of life are impacted by the circumstances and experiences of their caregivers. Subjective caregiver burdens represent potentially modifiable risks for undesired care transitions and opportunities for promoting hospice use. Future work is warranted to identify and address these issues as they occur.

Keywords

Alzheimer’s diseaseDementiaNHATSNSOCCaregiverEnd-of-lifeTerminal careCare transitions
Type
Original Article
Information
Palliative & Supportive Care , Volume 21 , Issue 6 , December 2023 , pp. 1001 - 1015
Check for updates
Copyright
© The Author(s), 2022. Published by Cambridge University Press.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer’s Association (2021) Facts and figures. https://www.alz.org/alzheimers-dementia/facts-figures (accessed 27  November 2021).Google Scholar
Amjad, H, Mulcahy, J, Kasper, JD, et al. (2021) Do caregiving factors affect hospitalization risk among disabled older adults? Journal of the American Geriatrics Society 69(1), 129–139. doi:10.1111/jgs.16817CrossRefGoogle ScholarPubMed
Ashbourne, J, Boscart, V, Meyer, S, et al. (2021) Health care transitions for persons living with dementia and their caregivers. BMC Geriatrics 21(1), . doi:10.1186/s12877-021-02235-5CrossRefGoogle ScholarPubMed
Beach, SR, Schulz, R, Friedman, EM, et al. (2020) Adverse consequences of unmet needs for care in high-need/high-cost older adults. The Journals of Gerontology: Series B 75(2), 459–470. doi:10.1093/geronb/gby021Google ScholarPubMed
Cagle, JG, Lee, J, Ornstein, KA, et al. (2020) Hospice utilization in the United States: A prospective cohort study comparing cancer and noncancer deaths. Journal of the American Geriatrics Society 68(4), 783–793. doi:10.1111/jgs.16294CrossRefGoogle ScholarPubMed
Centers for Disease Control and Prevention [CDC] (2019) Caregiving for a person with Alzheimer’s disease or a related dementia. https://www.cdc.gov/aging/caregiving/alzheimer.htm (accessed 28  November 2021).Google Scholar
Committee on Family Caregiving for Older Adults (2016) Families caring for an aging America. https://www.nap.edu/catalog/23606 (accessed 13 September 2022).Google Scholar
Cross, AJ, Garip, G and 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. doi:10.1080/08870446.2018.1496250CrossRefGoogle ScholarPubMed
Cross, SH, Kaufman, BG, Taylor, DH Jr, et al. (2020) Trends and factors associated with place of death for individuals with dementia in the United States. Journal of the American Geriatrics Society 68(2), 250–255. doi:10.1111/jgs.16200CrossRefGoogle ScholarPubMed
Galvin, JE, Roe, CM, Xiong, C, et al. (2006) Validity and reliability of the AD8 informant interview in dementia. Neurology 67(11), 1942–1948. doi:10.1212/01.wnl.0000247042.15547.ebCrossRefGoogle ScholarPubMed
Graessel, E, Berth, H, Lichte, T, et al. (2014) Subjective caregiver burden: Validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s. BMC Geriatrics 14(1), . doi:10.1186/1471-2318-14-23CrossRefGoogle ScholarPubMed
Hirschman, KB and Hodgson, NA (2018) Evidence-based interventions for transitions in care for individuals living with dementia. The Gerontologist 58, S129–S140. doi:10.1093/geront/gnx152CrossRefGoogle ScholarPubMed
Institute of Medicine [IOM] (2015) Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press.Google Scholar
Kasper, JD and Freedman, VA (2020) National Health and Aging Trends Study (NHATS) User Guide: Rounds 1–9 Final Release. Baltimore, MD: Johns Hopkins University School of Public Health. https://www.nhats.org/sites/default/files/2021-04/NHATS_User_Guide_R9_Final_Release_0.pdf.Google Scholar
Kasper, JD, Freedman, VA and Spillman, BC (2013) Classification of persons by dementia status in the National Health and Aging Trends Study. Technical Paper No. 5. https://nhatspubdemo.westat.com/scripts/documents/NHATS_Dementia_Technical_Paper_5_Jul2013.pdf.Google Scholar
Kasper, JD, Freedman, VA, Spillman, BC, et al. (2015) The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Affairs 34(10), 1642–1649. doi:10.1377/hlthaff.2015.0536CrossRefGoogle ScholarPubMed
Kumar, V, Ankuda, CK, Aldridge, MD, et al. (2020) Family caregiving at the end of life and hospice use: A national study of Medicare beneficiaries. Journal of the American Geriatrics Society 68(10), 2288–2296. doi:10.1111/jgs.16648CrossRefGoogle ScholarPubMed
LaValley, SA (2017) End-of-life caregiver social support activation: The roles of hospice clinicians and professionals. Qualitative Health Research 28(1), 87–97. doi:10.1177/1049732317732963CrossRefGoogle ScholarPubMed
Lazarus, RS and Folkman, S (1984) Stress, Appraisal, and Coping. New York: Springer.Google Scholar
Leniz, J, Higginson, IJ, Stewart, R, et al. (2019) Understanding which people with dementia are at risk of inappropriate care and avoidable transitions to hospital near the end-of-life: A retrospective cohort study. Age and Ageing 48(5), 672–679. doi:10.1093/ageing/afz052CrossRefGoogle ScholarPubMed
Lindt, N, van Berkel, J and Mulder, BC (2020) Determinants of overburdening among informal carers: A systematic review. BMC Geriatrics 20(1), . doi:10.1186/s12877-020-01708-3CrossRefGoogle ScholarPubMed
Luth, EA, Russell, DJ, Xu, JC, et al. (2021) Survival in hospice patients with dementia: The effect of home hospice and nurse visits. Journal of the American Geriatrics Society 69(6), 1529–1538. doi:10.1111/jgs.17066CrossRefGoogle ScholarPubMed
Melis, RJF, Haaksma, ML and Muniz-Terrera, G (2019) Understanding and predicting the longitudinal course of dementia. Current Opinion in Psychiatry 32(2), 123–129. doi:10.1097/YCO.0000000000000482CrossRefGoogle ScholarPubMed
Montaquila, J, Freedman, VA, Edwards, B, et al. (2012) National Health and Aging Trends Study Round 1 sample design and selection. NHATS Technical Paper No. 1. https://www.nhats.org/scripts/sampling/NHATS_Round1_Sample_Design_05_10_12.pdf.Google Scholar
Nguyen, HQ, Haupt, EC, Duan, L, et al. (2022) Hospital utilisation in home palliative care: Caregiver health, preparedness and burden associations. BMJ Supportive and Palliative Care. doi:10.1136/bmjspcare-2021-003455CrossRefGoogle ScholarPubMed
Ornstein, KA, Kelley, AS, Bollens-Lund, E, et al. (2017) A national profile of end-of-life caregiving in the United States. Health Affairs 36(7), 1184–1192. doi:10.1377/hlthaff.2017.0134CrossRefGoogle ScholarPubMed
Pearlin, LI, Mullan, JT, Semple, SJ, et al. (1990) Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist 30(5), 583–594. doi:10.1093/geront/30.5.583CrossRefGoogle ScholarPubMed
Pendergrass, A, Malnis, C, Graf, U, et al. (2018) Screening for caregivers at risk: Extended validation of the short version of the Burden Scale for Family Caregivers (BSFC-s) with a valid classification system for caregivers caring for an older person at home. BMC Health Services Research 18(1), . doi:10.1186/s12913-018-3047-4CrossRefGoogle ScholarPubMed
Porock, D, Bakk, L, Sullivan, SS, et al. (2015) National priorities for dementia care: Perspectives of individuals living with dementia and their care partners. Journal of Gerontological Nursing 41(8), 9–16. doi:10.3928/00989134-20150710-02CrossRefGoogle ScholarPubMed
Pristavec, T (2019) The burden and benefits of caregiving: A latent class analysis. The Gerontologist 59(6), 1078–1091. doi:10.1093/geront/gny022CrossRefGoogle ScholarPubMed
Pristavec, T and Luth, EA (2020) Informal caregiver burden, benefits, and older adult mortality: A survival analysis. The Journals of Gerontology: Series B 75(10), 2193–2206. doi:10.1093/geronb/gbaa001CrossRefGoogle ScholarPubMed
Riffin, C, Van Ness, PH, Wolff, JL, et al. (2019) Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. Journal of the American Geriatrics Society 67(2), 277–283. doi:10.1111/jgs.15664CrossRefGoogle Scholar
Romo, R, Carpenter, J, Buck, H, et al. (2019). Hospice and Palliative Nurses Association (HPNA) research agenda 2019–2022. Hospice and Palliative Nurses Association 21(4), E17–E23. doi:10.1097/NJH.0000000000000580CrossRefGoogle ScholarPubMed
Sadak, T, Foster Zdon, S, Ishado, E, et al. (2017) Potentially preventable hospitalizations in dementia: Family caregiver experiences. International Psychogeriatrics 29(7), 1201–1211. doi:10.1017/s1041610217000217CrossRefGoogle ScholarPubMed
Saragosa, M, Jeffs, L, Okrainec, K, et al. (2021) Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers. Dementia 21(1), 153–180. doi:10.1177/14713012211031779CrossRefGoogle ScholarPubMed
Shepherd, H, Livingston, G, Chan, J, et al. (2019) Hospitalisation rates and predictors in people with dementia: A systematic review and meta-analysis. BMC Medicine 17(1), . doi:10.1186/s12916-019-1369-7CrossRefGoogle ScholarPubMed
SS, Sullivan, CS, Li, de Rosa, C, et al. (2022) Development of a longitudinal dataset of persons with dementia and their caregivers through the end-of-life: A Statistical Analysis System algorithm for joining National Health and Aging Trends Study/National Study of Caregiving. American Journal of Hospice and Palliative Care 39(9), 1052–1060. doi:10.1177/10499091211057291Google Scholar
Statistical Analysis Software Institute (2013) SAS® 9.4 Statements. Cary, NC: SAS Institute Inc.Google Scholar
Teno, JM, Gozalo, P, Trivedi, AN, et al. (2018) Site of death, place of care, and health care transitions among US Medicare beneficiaries, 2000–2015. JAMA 320(3), 264–271. doi:10.1001/jama.2018.8981CrossRefGoogle ScholarPubMed
Vick, JB, Ornstein, KA, Szanton, SL, et al. (2019) Does caregiving strain increase as patients with and without dementia approach the end of life? Journal of Pain and Symptom Management 57(2), . doi:10.1016/j.jpainsymman.2018.11.004CrossRefGoogle ScholarPubMed
Williamson, LE, Evans, CJ, Cripps, RL, et al. (2021) Factors associated with emergency department visits by people with dementia near the end of life: A systematic review. Journal of the American Medical Directors Association 22(10), . doi:10.1016/j.jamda.2021.06.012CrossRefGoogle ScholarPubMed
Wladkowski, SP, Wallace, CL and Gibson, A (2020) A theoretical exploration of live discharge from hospice for caregivers of adults with dementia. Journal of Social Work in End-of-Life & Palliative Care 16(2), 133–150. doi:10.1080/15524256.2020.1745351CrossRefGoogle ScholarPubMed
Wolff, JL, Mulcahy, J, Huang, J, et al. (2018a) Family caregivers of older adults, 1999–2015: Trends in characteristics, circumstances, and role-related appraisal. The Gerontologist 58(6), 1021–1032. doi:10.1093/geront/gnx093CrossRefGoogle ScholarPubMed
Wolff, JL, Mulcahy, J, Roth, DL, et al. (2018b) Long-term nursing home entry: A prognostic model for older adults with a family or unpaid caregiver. Journal of the American Geriatrics Society 66(10), 1887–1894. doi:10.1111/jgs.15447CrossRefGoogle ScholarPubMed
World Health Organization [WHO] (2021) WHO takes steps to address glaring shortage of quality palliative care services. https://www.who.int/news/item/05-10-2021-who-takes-steps-to-address-glaring-shortage-of-quality-palliative-care-services.Google Scholar
Wright, CM, Youens, D and Moorin, RE (2018) Earlier initiation of community-based palliative care is associated with fewer unplanned hospitalizations and emergency department presentations in the final months of life: A population-based study among cancer decedents. Journal of Pain and Symptom Management 55(3), . doi:10.1016/j.jpainsymman.2017.11.021CrossRefGoogle ScholarPubMed