Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives
Open accessAbstract
Introduction: Palliative care focuses on reducing suffering and improving quality of life for individuals with serious illness and their families. In an effort to develop palliative care interventions for specialty memory care clinics, this study characterizes memory care providers’ perspectives on addressing palliative care needs of people living with dementia (PLWD). Methods: Qualitative interviews with specialty memory care providers were followed by thematic analysis by a multidisciplinary research team. Results: Provider approaches overlap with key domains of palliative care. Approaches unique to dementia include having a detailed understanding of dementia syndromes, behavioral symptoms, and caregiver burden. Challenges were identified related to disease progression, provider‐level factors, and systems and cultural issues. Respondents identified training needed to strengthen a palliative care approach. Discussion: There are many strengths of using memory care teams to address palliative care needs of PLWD. However, they may require additional knowledge and training to strengthen their work.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Physicians at a memory care clinic endorsed that patients and family often have questions about care setting decisions, yet no protocols exist to help physicians anticipate and address these concerns.
“Physicians at a memory care clinic similarly endorsed that patients and family often have questions about care setting decisions, 18 yet no protocols exist to help physicians anticipate and address these concerns.”
From Care setting transitions for people with dementia: Qualitative perspectives of current and former care partners (2023) · cites this paper as [18]
Even dementia experts identify challenges in communicating about difficult topics, including diagnostic disclosure and prognosis, and worry about disrupting their relationship with the patient and caregivers.
“Even dementia experts identify challenges in communicating about difficult topics, including diagnostic disclosure and prognosis, [33][34][35] and worry about disrupting their relationship with the patient and caregivers.18”
From Care setting transitions for people with dementia: Qualitative perspectives of current and former care partners (2023) · cites this paper as [18]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
(1998) · Cited by 13,501 · see citing works
Dementia prevention, intervention, and care
Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S. G., Huntley, J., Ames, D., Ballard, C., Banerjee, S., Burns, A., Cohen-Mansfield, J., et al. (2017) · The Lancet · doi:10.1016/s0140-6736(17)31363-6 · Cited by 6,072 · see citing works
Association Between Palliative Care and Patient and Caregiver Outcomes
Kavalieratos, D., Corbelli, J. A., Zhang, D., Dionne-Odom, J. N., Ernecoff, N. C., Hanmer, J., Hoydich, Z., Ikejiani, D. Z., Klein‐Fedyshin, M., Zimmermann, C., et al. (2016) · JAMA · doi:10.1001/jama.2016.16840 · Cited by 1,183 · see citing works
van der Steen, J. T., Radbruch, L., Hertogh, C. M., de Boer, M. E., Hughes, J. C., Larkin, P., Francke, A. L., Jünger, S., Gove, D., Firth, P., et al. (2014) · Palliative Medicine · doi:10.1177/0269216313493685 · Cited by 997 · see citing works
Palliative Care for the Seriously Ill
Kelley, A. S., & Morrison, R. S. (2015) · New England Journal of Medicine · doi:10.1056/nejmra1404684 · Cited by 817 · see citing works
Evidence on the cost and cost-effectiveness of palliative care: A literature review
Smith, S., Brick, A., O’Hara, S., & Normand, C. E. M. (2013) · Palliative Medicine · doi:10.1177/0269216313493466 · Cited by 503 · see citing works
Estimate of Current Hospice and Palliative Medicine Physician Workforce Shortage
Lupu, D. (2010) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2010.07.004 · Cited by 469 · see citing works
Effectiveness of Specialized Palliative Care
Zimmermann, C., Riechelmann, R. P., Krzyzanowska, M. K., Rodin, G., & Tannock, I. F. (2008) · JAMA · doi:10.1001/jama.299.14.1698 · Cited by 468 · see citing works
Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial
Hanson, L. C., Zimmerman, S., Song, M.-K., Lin, F.-C., Rosemond, C., Carey, T. S., & Mitchell, S. L. (2017) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2016.7031 · Cited by 275 · see citing works
Possin, K. L., Merrilees, J. J., Dulaney, S., Bonasera, S. J., Chiong, W., Lee, K., Hooper, S. M., Allen, I. E., Braley, T., Bernstein, A., et al. (2019) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2019.4101 · Cited by 272 · see citing works
Self-citationOliver, D. J., Borasio, G. D., Caraceni, A. T., de Visser, M., Grisold, W., Lorenzl, S., Veronese, S., & Voltz, R. (2015) · European Journal of Neurology · doi:10.1111/ene.12889 · Cited by 261 · see citing works
Mitchell, S. L., Miller, S. C., Teno, J. M., Kiely, D. K., Davis, R. B., & Shaffer, M. L. (2010) · JAMA · doi:10.1001/jama.2010.1572 · Cited by 249 · see citing works
Boersma, I. M., Miyasaki, J. M., Kutner, J. S., & Kluger, B. M. (2014) · Neurology · doi:10.1212/wnl.0000000000000674 · Cited by 232 · see citing works
Wisniewski, S. R., Belle, S. H., Coon, D. W., Marcus, S. M., Ory, M. G., Burgio, L. D., Burns, R. A., & Schulz, R. (2003) · Psychology and Aging · doi:10.1037/0882-7974.18.3.375 · Cited by 224 · see citing works
Beyond exploratory: a tailored framework for designing and assessing qualitative health research
Rendle, K. A., Abramson, C. M., Garrett, S. B., Halley, M. C., & Dohan, D. (2019) · BMJ Open · doi:10.1136/bmjopen-2019-030123 · Cited by 195 · see citing works
Self-citationBrazil, K., Carter, G., Cardwell, C., Clarke, M., Hudson, P., Froggatt, K., McLaughlin, D., Passmore, P., & Kernohan, W. G. (2018) · Palliative Medicine · doi:10.1177/0269216317722413 · Cited by 164 · see citing works
Interventions for improving palliative care for older people living in nursing care homes
HALL, S. L., Kolliakou, A., Petkova, H., Froggatt, K. A., & Higginson, I. J. (2011) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd007132.pub2 · Cited by 160 · see citing works
Reuben, D. B., Evertson, L. C., Wenger, N. S., Serrano, K., Chodosh, J., Ercoli, L. M., & Tan, Z. S. (2013) · Journal of the American Geriatrics Society · doi:10.1111/jgs.12562 · Cited by 122 · see citing works
Barriers to palliative care for advanced dementia: a scoping review
Erel, M., Marcus, E., & Dekeyser-Ganz, F. (2017) · Annals of Palliative Medicine · doi:10.21037/apm.2017.06.13 · Cited by 103 · see citing works
Sommerbakk, R., Haugen, D. F., Tjora, A., Kaasa, S., & Hjermstad, M. J. (2016) · BMC Palliative Care · doi:10.1186/s12904-016-0132-5 · Cited by 102 · see citing works
Palliative Excellence in Alzheimer Care Efforts (PEACE): A Program Description
Shega, J. W., Levin, A., Hougham, G. W., Cox‐Hayley, D., Luchins, D. J., Hanrahan, P. A., Stocking, C., & Sachs, G. A. (2003) · Journal of Palliative Medicine · doi:10.1089/109662103764978641 · Cited by 101 · see citing works
Midtbust, M. H., Alnes, R. E., Gjengedal, E., & Lykkeslet, E. (2018) · BMC Health Services Research · doi:10.1186/s12913-018-3515-x · Cited by 90 · see citing works
Harrison, K. L., Dzeng, E. W., Ritchie, C. S., Shanafelt, T. D., Kamal, A. H., Bull, J., Tilburt, J. C., & Swetz, K. M. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2017.01.007 · Cited by 79 · see citing works
Self-citationThe Aging Brain Care Medical Home: Preliminary Data
LaMantia, M. A., Alder, C. A., Callahan, C. M., Gao, S., French, D. D., Austrom, M. G., Boustany, K. C., Livin, L. R., Bynagari, B., & Boustani, M. A. (2015) · Journal of the American Geriatrics Society · doi:10.1111/jgs.13447 · Cited by 76 · see citing works
Davies, N., Maio, L., Vedavanam, K., Manthorpe, J., Vernooij-Dassen, M., & Iliffe, S. (2013) · Health and Social Care in the community · doi:10.1111/hsc.12094 · Cited by 75 · see citing works
Verreault, R., Arcand, M., Misson, L., Durand, P. J., Kröger, E., Aubin, M., Savoie, M., Hadjistavropoulos, T., Kaasalainen, S., Bédard, A., et al. (2017) · Palliative Medicine · doi:10.1177/0269216317719588 · Cited by 74 · see citing works
Quality palliative care for cancer and dementia in five European countries: some common challenges
Davies, N., Maio, L., Paap, J. V. R., Mariani, E., Jaspers, B., Sommerbakk, R., Grammatico, D., Manthorpe, J., Ahmedzai, S., Vernooij-Dassen, M., et al. (2013) · Aging & Mental Health · doi:10.1080/13607863.2013.843157 · Cited by 70 · see citing works
Mehta, A. K., Najjar, S. N., May, N., Shah, B., & Blackhall, L. J. (2018) · Journal of Palliative Medicine · doi:10.1089/jpm.2018.0191 · Cited by 70 · see citing works
The Role of Care Navigators Working with People with Dementia and Their Caregivers
Bernstein, A., Harrison, K. L., Dulaney, S., Merrilees, J., Bowhay, A., Heunis, J., Choi, J., Feuer, J. E., Clark, A. M., Chiong, W., et al. (2019) · Journal of Alzheimer’s Disease · doi:10.3233/jad-180957 · Cited by 67 · see citing works
Self-citationEvolving the Palliative Care Workforce to Provide Responsive, Serious Illness Care
Kamal, A. H., Maguire, J. M., & Meier, D. E. (2015) · Annals of Internal Medicine · doi:10.7326/m15-0071 · Cited by 65 · see citing works
Advance Care Planning in Cognitively Impaired Older Adults
Thomas, J. D., Sanchez-Reilly, S. E., Bernacki, R., O'Neill, L. B., Morrison, L. J., Kapo, J. M., Periyakoil, V. S., & Carey, E. C. (2018) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15471 · Cited by 63 · see citing works
Palliative Care for Patients with Dementia: A National Survey
Torke, A. M., Holtz, L. R., Hui, S., Castelluccio, P., Connor, S., Eaton, M., & Sachs, G. A. (2010) · Journal of The American Geriatrics Society · doi:10.1111/j.1532-5415.2010.03141.x · Cited by 61 · see citing works
Fox, S., Fitzgerald, C., Dening, K. H., Irving, K., Kernohan, G. W., Treloar, A. J., Oliver, D., Guérin, S., & Timmons, S. (2017) · BMC Palliative Care · doi:10.1186/s12904-017-0221-0 · Cited by 59 · see citing works
Dying With Dementia: Underrecognized and Stigmatized
Harrison, K. L., Hunt, L. J., Ritchie, C. S., & Yaffe, K. S. (2019) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15895 · Cited by 58 · see citing works
Self-citationImplementation issues relevant to outpatient neurology palliative care
Kluger, B. M., Persenaire, M., Holden, S. K., Palmer, L. T., Redwine, H. M., Berk, J., Anderson, C. A., Filley, C. M., Kutner, J. S., Miyasaki, J. M., et al. (2018) · Annals of Palliative Medicine · doi:10.21037/apm.2017.10.06 · Cited by 47 · see citing works
Achieving consensus and controversy around applicability of palliative care to dementia
van der Steen, J. T., Radbruch, L., de Boer, M. E., Jünger, S., Hughes, J. C., Larkin, P. J., Gove, D., Francke, A. L., Koopmans, R. T. C. M., Firth, P., et al. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215000824 · Cited by 46 · see citing works
Education Research: Neurology residency training in the new millennium
Schuh, L. A., Adair, J. C., Drogan, O., D, B. M. K. M., Morgenlander, J. C., & Corboy, J. R. (2009) · Neurology · doi:10.1212/01.wnl.0000342389.60811.ca · Cited by 43 · see citing works
Chang, E. M. L., Hancock, K. M., Harrison, K., Daly, J., Johnson, A., Easterbrook, S., Noel, M., Luhr-Taylor, M., & Davidson, P. M. (2005) · Nurse Education Today · doi:10.1016/j.nedt.2005.02.003 · Cited by 42 · see citing works
Self-citationAligning policy objectives and payment design in palliative care
Duckett, S. J. (2018) · BMC Palliative Care · doi:10.1186/s12904-018-0294-4 · Cited by 28 · see citing works
Samus, Q. M., Amjad, H., Johnston, D. M., Black, B. S., Bartels, S. J., & Lyketsos, C. G. (2015) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2015.01.005 · Cited by 24 · see citing works
Integrating palliative care into neurological practice
Neurology, T. L. (2017) · The Lancet Neurology · doi:10.1016/s1474-4422(17)30176-x · Cited by 14 · see citing works
Interventions for improving palliative care for older people living in nursing care homes
HALL, S. L., Kolliakou, A., Davies, E., Froggatt, K. A., & Higginson, I. J. (2008) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd007132 · Cited by 11 · see citing works
The application of palliative care in dementia
Tajari, M., & Pandpazir, M. (2019) · Journal of Family Medicine and Primary Care · doi:10.4103/jfmpc.jfmpc_105_18 · Cited by 6 · see citing works
Application of palliative care in demented patients: the caregivers' point of view.
Zapponi, S., Ferreira, A. A., Galvagni, P., Roccatagliata, C., Rodolfi, S., Spina, M., Foà, C., Sarli, L., & Artioli, G. (2018) · Acta bio-medica dell'Ateneo parmense/Acta biomedica · doi:10.23750/abm.v89i7-s.7895 · Cited by 3 · see citing works
Palliative and end-of-life care should not be last or least
Neurology, T. L. (2014) · The Lancet Neurology · doi:10.1016/s1474-4422(14)70078-x · Cited by 1 · see citing works
Flagged first, then by citations
1 of the 46 references couldn’t be matched to a known paper.
Research works printed but not linked: 1
- [47]Palliative care for dementia—time to think again? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665910/. Accessed July 17, 2020.
Cited by
Sorted by citations
Shafir, A., Ritchie, C. S., Garrett, S. B., Bernstein Sideman, A., Naasan, G., Merrilees, J., Widera, E., Flint, L., & Harrison, K. L. (2022) · Journal of Alzheimer’s Disease · doi:10.3233/jad-215203 · Cited by 45 · see citing works
Self-citationTropea, J., Nestel, D., Johnson, C., Hayes, B. J., Hutchinson, A. F., Brand, C. A., Le, B. H. C., Blackberry, I., Caplan, G. A., Bicknell, R., et al. (2022) · BMC Geriatrics · doi:10.1186/s12877-022-02809-x · Cited by 25 · see citing works
Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease
Harrison, K. L., Garrett, S. B., Gilissen, J., Terranova, M. J., Sideman, A. B., Ritchie, C. S., & Geschwind, M. D. (2022) · Prion · doi:10.1080/19336896.2022.2043077 · Cited by 23 · see citing works
Self-citationHarrison, K. L., Garrett, S. B., Halim, M., Bernstein Sideman, A., Allison, T. A., Dohan, D., Naasan, G., Miller, B. L., Smith, A. K., & Ritchie, C. S. (2022) · Journal of Alzheimer's Disease · doi:10.3233/jad-220536 · Cited by 18 · see citing works
Self-citationRadcliffe, K. G., Halim, M., Ritchie, C. S., Maus, M., & Harrison, K. L. (2023) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091231155601 · Cited by 10 · see citing works
Self-citationSadowska, K., Turnwald, M., O’Neil, T. A., Maust, D. T., & Gerlach, L. B. (2024) · Journal of the American Geriatrics Society · doi:10.1111/jgs.19320 · Cited by 10 · see citing works
Palliative and end-of-life care curricula in prelicensure nursing education
Condry, H. M., & Aucoin, J. W. (2023) · Teaching and learning in nursing · doi:10.1016/j.teln.2023.11.002 · Cited by 6 · see citing works
Sideman, A. B., Harrison, K. L., Garrett, S. B., Paladino, J., Naasan, G., & Ritchie, C. S. (2024) · Journal of Geriatric Psychiatry and Neurology · doi:10.1177/08919887241254468 · Cited by 5 · see citing works
Self-citationFlaherty, C. N., Bail, J. R., Winstead, V., Carter, P. A., Smith, L., Hooper, G. L., Lerner, N. B., & Jablonski, R. A. (2024) · Geriatric Nursing · doi:10.1016/j.gerinurse.2024.11.017 · Cited by 3 · see citing works
Pondoc, S. S. W., & Bulan, P. M. P. (2024) · Occupational Therapy In Health Care · doi:10.1080/07380577.2024.2437020 · Cited by 3 · see citing works
International models of neuropalliative care
Gursahani, R., & Lorenzl, S. (2022) · Handbook of clinical neurology · doi:10.1016/b978-0-323-85029-2.00012-9 · Cited by 2 · see citing works
Paladino, J., & Ritchie, C. S. (2024) · Journal of Palliative Medicine · doi:10.1089/jpm.2024.0144 · Cited by 1 · see citing works
Self-citationAwareness and misconceptions of palliative care among paid, unpaid, and non-caregivers in the U.S.
Xie, Z., Hong, Y., Liang, J., Akter, J., Hu, J., Fisher, C., & Wilkie, D. J. (2026) · BMC Palliative Care · doi:10.1186/s12904-026-02190-1 · Cited by 1 · see citing works
Khemai, C. (2023) · doi:10.26481/dis.20231115ck
Extra/ordinary medicine: Toward an anthropology of primary care
Sideman, A. B., & Razon, N. (2024) · Social Science & Medicine · doi:10.1016/j.socscimed.2024.116707
Udoh, I. I. (2023) · Juniper Online Journal of Public Health · doi:10.19080/jojph.2023.07.555728
Hacking, C., de Boer, B., Verbeek, H., Hamers, J. P. H., & Aarts, S. (2024) · JMIR Human Factors · doi:10.2196/57911
Merrilees, J. J., Dulaney, S., & LEVENSON, R. W. (2025) · Cambridge University Press eBooks · doi:10.1017/9781108985055.026
Tropea, J., Nestel, D., Johnson, C., Hayes, B. J., Hutchinson, A. F., Brand, C. A., Le, B. H., Blackberry, I., Caplan, G. A., Bicknell, R., et al. (2022) · Figshare · doi:10.6084/m9.figshare.19174045
Ferguson, E. L., Miramontes, S., White, J. S., Possin, K. L., Chodos, A. H., Xia, F., Raphael, E., Smith, A. K., & Glymour, M. M. (2026) · American Journal of Epidemiology · doi:10.1093/aje/kwag034
- Authors
- Bernstein Sideman, A., Harrison, K. L., Garrett, S. B., Naasan, G., Dementia Palliative Care Writing Group, & Ritchie, C. S.
- Affiliations
- Philip R. Lee Institute for Health Policy Studies University of California, San Francisco San Francisco California USA
- University of California, San Francisco (US)
- Icahn School of Medicine at Mount Sinai (US)
- Harvard University (US)
- Venue
- Alzheimer's & Dementia: Translational Research & Clinical Interventions
- Publisher
- Wiley
- Published
- 2021-01
- Volume
- 7
- Issue
- 1
- Pages
- e12144-e12144
- ISSN
- 2352-8737 (ISSN-L)
- PMC
- PMC8087986
- OpenAlex
- W3160119700
- Cited by
- 21
- References
- 46
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 7 · 2023: 4 · 2022: 6 · 2021: 1
- FWCI
- 3.90
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Alzheimer s & Dementia Translational Research & Clinical Interventions (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- eScholarship (California Digital Library) (submittedVersion, cc-by-nc-nd)
- Funders
- Global Brain Health Institute
- National Institute on Aging (K01AG059840, K01AG059831, P30AG044280)
- National Center for Advancing Translational Sciences (KL2TR001870)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- palliative care, dementia, provider perspectives, behavioral symptoms of dementia, caregiver burden, disease progression, palliative care education, quality of life, end-of-life care
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
