Caregiver-reported barriers to quality end-of-life care in dementia with Lewy bodies: A qualitative analysis
Open accessAbstract
OBJECTIVE: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. METHODS: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. RESULTS: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. CONCLUSION: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.
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Specific information gaps were noted around options for long-term care, day-care centers, palliative and hospice services, and in-home support.
“Specific information gaps were noted around options for long-term care, day-care centers, palliative and hospice services, and in-home support (Armstrong et al., 2020; Fitzpatrick & Grace, 2019; Kupeli et al., 2019; Larsen et al., 2020; Radcliffe et al., 2023; Rognstad et al., 2020).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Armstrong et al., 2020
The Results (page unavailable) report difficulty finding a suitable care facility and in-home caregivers, as well as a need for more information about what to expect from hospice. The Discussion (page unavailable) notes a lack of awareness of palliative care’s role. The paper does not identify information gaps about day-care centers or present all of these care options as information gaps; some were barriers to access instead. (LLM, conf=0.84)
Experimental — accuracy not yet measuredInadequate knowledge of dementia, particularly less common subtypes such as frontotemporal dementia and Lewy body dementia, contributed to uncertainty and inconsistent care during transitions.
“Inadequate knowledge of dementia, particularly less common subtypes such as frontotemporal dementia and Lewy body dementia, contributed to uncertainty and inconsistent care during transitions (Armstrong et al., 2020; Rognstad et al., 2020).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Armstrong et al., 2020
The Results sections report that limited knowledge of Lewy body dementia hindered end-of-life care across hospitals, facilities, and hospice, and that staff unfamiliarity sometimes led to prescribing errors. They also describe conflicting diagnoses and poorly coordinated care. The paper does not address frontotemporal dementia or specifically establish that inadequate knowledge caused uncertainty and inconsistent care during transitions. (LLM, conf=0.84)
Experimental — accuracy not yet measuredCaregivers described that profit-driven care models, insurance limitations, or lack of subsidized services restricted choices and increased out-of-pocket costs during critical transitions.
“In several studies, caregivers described how profit-driven care models, insurance limitations, or lack of subsidized services restricted choices and increased out-of-pocket costs during critical transitions (Armstrong et al., 2020; Cottrell et al., 2020; Fitzpatrick & Grace, 2019; Freedman et al., 2022; Gilmore-Bykovskyi et al., 2021; Gresham et al., 2018; Hanssen & Tran, 2019; Holton et al., 2023”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Armstrong et al., 2020
The Results section (‘Barriers at Different Levels of the Healthcare System’; page unavailable) reports cost barriers for both home and facility care, difficulty finding facilities, and delays in meeting hospice eligibility criteria. It does not attribute restricted choices to profit-driven models or a lack of subsidized services, or specifically report increased out-of-pocket costs during transitions. (LLM, conf=0.84)
Experimental — accuracy not yet measuredCaregivers reported confusion and frustration arising from conflicting advice, limited updates, and a lack of clarity about care plans.
“Caregivers reported confusion and frustration arising from conflicting advice, limited updates, and a lack of clarity about care plans (Armstrong et al., 2020; de Vries et al., 2019; Groenvynck et al., 2022; Khemai et al., 2022).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Armstrong et al., 2020
The Results (Barriers at Different Levels of the Healthcare System; page unavailable) report that caregivers wanted better communication with facility staff and that differing expectations caused conflict. The Results also describe poor hospice responsiveness and a need for more information about what to expect. These passages support communication-related difficulties, but do not specifically establish conflicting advice, limited updates, or unclear care plans as the reported causes of confusion and frustration. (LLM, conf=0.82)
Experimental — accuracy not yet measuredChronic understaffing in care facilities undermined continuity of care and created anxiety for families.
“Chronic understaffing in care facilities undermined continuity of care and created anxiety for families (Armstrong et al., 2020; Brooks et al., 2022b; Rognstad et al., 2020; Smith & Phillipson, 2022; Tropea et al., 2022).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Armstrong et al., 2020
The Results section (page unavailable) says caregivers reported challenges from insufficient staffing and staff turnover in facilities. The Discussion (page unavailable) links disrupted continuity and family stress to moves between facilities because of dementia-related symptoms, not to understaffing. The copy does not establish that understaffing was chronic or that it caused those effects. (LLM, conf=0.85)
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“This was associated with further stress at the EOL, consistent with prior research showing that continuity of care in place and relationships is important for quality EOL experiences in dementia.(37) Dementia with Lewy bodies–specific considerations also affected hospice care.”
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Motamedi, M., Brandenburg, C., Bakhit, M., Michaleff, Z. A., Albarqouni, L., Clark, J. M., Ooi, M., Bahudin, D., Chróinín, D. N., & Cardona, M. (2021) · BMC Geriatrics · doi:10.1186/s12877-021-02680-2 · Cited by 47 · see citing works
“While the preference was usually for more information, some caregivers appreciated the health professionals asking them how much they wanted to know [15, 20].”
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“18 During the coronavirus disease 2019 (COVID-19) pandemic, access to telemedicine services via videoconference for people with ADRD and their caregivers was associated with improved well-being for both caregivers and their care recipients.”
BackgroundIdentifying Core Domains to Assess the “Quality of Death”: A Scoping Review
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“Family members of individuals who died with DLB described both lack of knowledge of what to expect and negative experiences relating to lacking healthcare professional education and knowledge [12, 34, 35].”
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“In caregiver interviews about the end of life of their loved one with DLB, numerous participants commented on how diagnostic delays and initial misdiagnosis negatively affected their experiences, even at the end of life.(52)”
BackgroundArmstrong, M. J., Slande Alliance, Corsentino, P., Lunde, A. M., & Taylor, A. (2021) · Dementia · doi:10.1177/14713012211038428 · Cited by 12 · see citing works
“Interviewee characteristics were similar to those of the survey participants: 89% of 657 survey respondents were women, 42% were spouses, and 53% were children (Armstrong et al., 2019b, 2020).”
ResultFleisher, J. E., Moshkovich, A., Levin, M. E., Akram, F., Hess, S., Suresh, M., Bentley, C. D., Manak, T. J., Mattke, M., Miller, A., et al. (2022) · Alzheimer Disease & Associated Disorders · doi:10.1097/wad.0000000000000535 · Cited by 10 · see citing works
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It is time to share Alzheimer biomarker results in dementia with Lewy bodies
Armstrong, M. J., Grill, J. D., & Tropea, T. F. (2025) · Alzheimer s & Dementia Diagnosis Assessment & Disease Monitoring · doi:10.1002/dad2.70144 · Cited by 8 · see citing works
“32,33 Results of AD biomarkers in individuals with DLB won’t change the preceding diagnostic process.”
Caregivers' Experience at an Integrated Memory Care Clinic
Kovaleva, M. A., Jennings, B. M., Song, M., Clevenger, C. K., Griffiths, P. C., & Hepburn, K. W. (2021) · Research in Gerontological Nursing · doi:10.3928/19404921-20210115-01 · Cited by 8 · see citing works
Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study
Stacy, K. E., Perazzo, J. D., Shatz, R. S., & Bakas, T. (2021) · Western Journal of Nursing Research · doi:10.1177/01939459211050957 · Cited by 8 · see citing works
“Although the sample was small, needs and concerns reflected those described in the literature (Armstrong et al., 2019, 2020b; Galvin et al., 2010a; Killen et al., 2016; Leggett et al., 2011).”
BackgroundResultHome-based care for people living with dementia at the end of life: the perspective of experts
Pinkert, C., & Holle, B. (2023) · BMC Palliative Care · doi:10.1186/s12904-023-01251-z · Cited by 6 · see citing works
“These include, for example, lack of cooperation in the health system [44–46], attitudes, beliefs and values of health professionals [46, 43], lack of knowledge [44] or lack of understanding that dementia is an incurable disease and a palliative condition [47, 48].”
BackgroundWollney, E. N., Sovich, K., LaBarre, B., Maixner, S. M., Paulson, H. L., Manning, C. A., Fields, J. A., Lunde, A. M., Boeve, B. F., Galvin, J. E., et al. (2024) · PLoS ONE · doi:10.1371/journal.pone.0309530 · Cited by 6 · see citing works
“This is consistent with prior research in DLB [4,5,19] and other dementias [36–39], with several prior studies suggesting that families can be unaware that dementia can be terminal [38,40,41].”
BackgroundResultHill, J. D., de Forcrand, C., Cuthel, A. M., Adeyemi, O. J., Shallcross, A. J., & Grudzen, C. R. (2022) · PLoS ONE · doi:10.1371/journal.pone.0270961 · Cited by 5 · see citing works
Mammen, J. R., Goldman, J. G., Tyo, M. B., & Xiao, Y. (2025) · Alzheimer s & Dementia · doi:10.1002/alz.70217 · Cited by 4 · see citing works
“58,59 Finally, two studies explored the impact of isolation attributed to the COVID-19 lockdown on the patient and caregiver.”
Oh, O., Ulrich, C. M., Massimo, L. M., & Demiris, G. (2025) · Palliative Medicine · doi:10.1177/02692163251353013 · Cited by 4 · see citing works
“32,36 In other healthcare systems, such as the United Kingdom, where provider referrals were vital for entering hospice, some consultants did not recognize the patient as being in the dying phase, even when they eventually passed away a few days later.”
InfluentialHospice Use Among Medicare Beneficiaries With Parkinson Disease and Dementia With Lewy Bodies
Bock, M., Gan, S., Aldridge, M. D., Harrison, K. L., Yaffe, K. S., Smith, A. K., Boscardin, W. J., & Hunt, L. J. (2025) · JAMA Network Open · doi:10.1001/jamanetworkopen.2025.0014 · Cited by 4 · see citing works
Improving Dementia Caregiver Activation With a Brief Communication Module
Wittenberg-Lyles, E. M., Sullivan, S. S., & Rios, M. (2023) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091231200639 · Cited by 4 · see citing works
Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review
Donnelly, P. S., Sweeney, A., Passmore, A. P., McCorry, N., & Kane, J. P. M. (2025) · Alzheimer s Research & Therapy · doi:10.1186/s13195-025-01760-4 · Cited by 3 · see citing works
“PPI was reported in 31 sources [36, 38, 39, 42, 43, 46, 50–52, 54, 56, 57, 59, 64, 67, 68, 82, 83, 86, 89–93, 95, 96, 108, 113–116], although this did not necessarily involve those affected by DLB or LBD. PPI references first appeared in 2016, peaking in 2021.”
Bentley, A., Salifu, Y., & Walshe, C. (2025) · Palliative & Supportive Care · doi:10.1017/s1478951524001962 · Cited by 2 · see citing works
Zhu, C. W., Gu, Y., Kociolek, A. J., Fernández, K. K., Cosentino, S., & Stern, Y. (2023) · Journal of Alzheimer s Disease · doi:10.3233/jad-221021 · Cited by 1 · see citing works
End-of-Life and Hospice Care in Neurologic Diseases
Chou, C. Z., Everett, E. A., McFarlin, J. M., & Ramanathan, U. (2024) · Seminars in Neurology · doi:10.1055/s-0044-1787809 · Cited by 1 · see citing works
“71,72 An increasing need for palliative care in PD and a growing workforce shortage of palliative care specialists mean that neurologists will be essential in providing guidance on symptom management and disease trajectory from diagnosis of PD through to EOL.”
BackgroundResultRefractory Psychosis as a Red Flag for End of Life in Individuals With Dementia With Lewy Bodies
Armstrong, M. J., Galvin, J. E., Manning, C. A., Boeve, B. F., Pontone, G. M., Taylor, A., Patel, B., Fleisher, J. E., & Maixner, S. M. (2025) · Alzheimer Disease & Associated Disorders · doi:10.1097/wad.0000000000000660 · Cited by 1 · see citing works
“We reviewed codebooks and quotes from three studies regarding end-of-life experiences in DLB 2,5,6,9 to identify previously reported experiences that aligned with a prominent worsening of psychosis before death.”
Kivunja, S., Pryor, J., River, J., & Gullick, J. G. (2021) · Australasian Journal of Neuroscience · doi:10.21307/ajon-2021-008
“…resources and psychoeducational support groups to cover diagnosis, progression, therapies, daily function, QoL and caregiving would help to establish a community of people who acknowledge the challenges of living with LBD (Armstrong et al., 2020b; Rigby et al., 2019; Taylor & Yardley, 2014).”
Pathways to Neuropalliative Care Practice
Harrigan, E., Kirsch, H. L., Adjepong, K., & Crooms, R. C. (2024) · Seminars in Neurology · doi:10.1055/s-0044-1787807
Moody, C. D., & Dixon, J. (2026) · Health & Social Care in the Community · doi:10.1155/hsc/5590836
Pinkert, C., & Holle, B. (2023) · Figshare · doi:10.6084/m9.figshare.24076928
Chen, W.-H. W., Guo, J., Levy, S.-A. T., Britton, C. B., & Armstrong, M. J. (2025) · Journal of Alzheimer s Disease · doi:10.1177/13872877251409214
Experiences and Knowledge of Family Caregivers Providing End of Life Care to Older Adults at Home
Knutson, D. E., & Marie, B. S. (2026) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091261419499
Chen, Z.-J., Chen, R.-Y., Yin, C.-H., Li, Y., & Lin, M.-H. (2026) · BMC Palliative Care · doi:10.1186/s12904-026-02256-0
“Those needing HPC may struggle to express their physical and psycho-spiritual distress, leading to neglect from medical staff [43].”
Communication and support needs of dementia care partners at end-of-life
Alpert, J. M., Rothberg, M. B., Paasche‐Orlow, M. K., Hashmi, A. Z., Perez-Protto, S. E., Fox, J., & Wittenberg-Lyles, E. M. (2026) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091261486371
Husain, M., Hong, A., Tharp, M. E., Chen, Y., Naveed, A., Kee, S., Shankar, D. H., Chen, S. M., Hong, G., Gustashaw, K. A. R., et al. (2026) · Neurology Clinical Practice · doi:10.1212/cpj.0000000000200652
- Authors
- Armstrong, M. J., Alliance, S., Corsentino, P., Maixner, S. M., Paulson, H. L., & Taylor, A.
- Affiliations
- University of Florida Health (US)
- Lewy Body Dementia Association (US)
- University of Michigan (US)
- Corresponding author
- Armstrong, Melissa J.
- Venue
- American Journal of Hospice and Palliative Medicine®
- Publisher
- SAGE Publications
- Published
- 2020-01-06
- Volume
- 37
- Issue
- 9
- Pages
- 728-737
- ISSN
- 1049-9091 (ISSN-L)
- 1938-2715
- PMC
- PMC7335680
- OpenAlex
- W2999702670
- Cited by
- 35
- References
- 38
- Citations by year
- 2026: 5 · 2025: 9 · 2024: 4 · 2023: 6 · 2022: 3 · 2021: 6 · 2020: 2
- FWCI
- 3.19
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- American Journal of Hospice and Palliative Medicine® (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Raymond E. Kassar Research Fund for Lewy Body Dementia
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Keywords
- dementia with Lewy bodies, end-of-life care, quality of care, caregiver experiences, barriers to care, hospice access, skilled nursing facilities, care coordination, prescribing errors, behavioral symptoms
- MeSH terms
- Attitude of Health Personnel, Communication, Continuity of Patient Care, Family, Female, Humans, Interviews as Topic, Health Knowledge, Attitudes, Practice, Male, Quality of Health Care, Quality of Life, Terminal Care, United States, Caregivers, Hospice Care, Lewy Body Disease, Qualitative Research
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