Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences
Open accessAbstract
BACKGROUND: End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia. DESIGN: Evidence synthesis including systematic reviews and primary studies. PROSPERO registration: CRD42018107718. DATA SOURCES: PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library were searched (July 2018). No year limit applied. To be included, reviews had to evaluate effectiveness of ACP for people with dementia or report on views and experiences of ACP from the perspective of people with dementia, carers, or health and care professionals. Additional searches (September 2018) were conducted to identify recent primary studies not included in the reviews. REVIEW METHODS: Data extraction was undertaken by one reviewer and checked by a second. Methodological quality was assessed using AMSTAR-2 and Joanna Briggs Institute instruments by two authors independently. Outcomes were categorized and tabulated to assess effectiveness. Qualitative data was analysed using thematic synthesis. RESULTS: Nineteen reviews (163 unique studies) and 11 primary articles with a range of advance care planning definitions and of variable quality were included. Advance care planning was associated with decreased hospitalizations, increased concordance between care received and prior wishes and increased completion of advance care planning documents but quality of primary research was variable. Views of ACP for people with dementia can be clustered around six themes; 1) timing and tailoring, 2) willingness to engage, 3) roles and responsibilities of healthcare professionals, 4) relationships, 5) training and 6) resources needed. Diminishing decision-making capacity over time is a key overarching feature. CONCLUSIONS: Advance care planning is acceptable for people with dementia and their carers and is associated with improved outcomes. Guidelines on which outcomes and which definition to use are necessary, as is research to test different approaches to ACP. Education on topics related to diminishing decision-making capacity is key to optimize advance care planning for people with dementia and their carers.
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?
Emerging models such as ACP can reduce distress and better align care with the preferences of people with dementia and their families.
“The identification of emerging models, such as ACP, contributes to the growing evidence base demonstrating that these innovations can reduce distress and better align care with the preferences of people with dementia and their families (Wendrich-van Dael 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 Wendrich-van Dael et al., 2020
Persons living with dementia often experience inadequate end-of-life care.
“As a result, those living with dementia often experience inadequate end-of-life care [2, 9].”
From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [2]
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
Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement
Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & for the PRISMA Group (2009) · BMJ · doi:10.1136/bmj.b2535 · Cited by 83,823 · see citing works
Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement
Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & The PRISMA Group (2009) · PLoS Medicine · doi:10.1371/journal.pmed.1000097 · Cited by 64,042 · see citing works
Preferred reporting items for systematic reviews and meta-analyses: the PRISMA Statement.
(2009) · PubMed Central · Cited by 44,859 · see citing works
Shea, B. J., Reeves, B. C., Wells, G., Thuku, M., Hamel, C., Moran, J., Moher, D., Tugwell, P., Welch, V., Kristjansson, E., et al. (2017) · BMJ · doi:10.1136/bmj.j4008 · Cited by 10,636 · see citing works
Methods for the thematic synthesis of qualitative research in systematic reviews
Thomas, J., & Harden, A. (2008) · BMC Medical Research Methodology · doi:10.1186/1471-2288-8-45 · Cited by 9,312 · see citing works
Aromataris, E., Fernandez, R., Godfrey, C. M., Holly, C., Khalil, H., & Tungpunkom, P. (2015) · International Journal of Evidence-Based Healthcare · doi:10.1097/xeb.0000000000000055 · Cited by 2,587 · see citing works
Lockwood, C., Munn, Z., & Porritt, K. (2015) · International Journal of Evidence-Based Healthcare · doi:10.1097/xeb.0000000000000062 · Cited by 2,456 · see citing works
Sudore, R. L., Lum, H. D., You, J. J., Hanson, L. C., Meier, D. E., Pantilat, S. Z., Matlock, D. D., Rietjens, J. A. C., Korfage, I. J., Ritchie, C. S., et al. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2016.12.331 · Cited by 1,726 · see citing works
Rietjens, J. A. C., Sudore, R. L., Connolly, M., van Delden, J. J., Drickamer, M. A., Droger, M., van der Heide, A., Heyland, D. K., Houttekier, D., Janssen, D. J. A., et al. (2017) · The Lancet Oncology · doi:10.1016/s1470-2045(17)30582-x · Cited by 1,371 · see citing works
Methodology in conducting a systematic review of systematic reviews of healthcare interventions
Smith, V., Devane, D., Begley, C. M., & Clarke, M. (2011) · BMC Medical Research Methodology · doi:10.1186/1471-2288-11-15 · Cited by 1,227 · 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
Chapter 3: Systematic reviews of effectiveness
(2020) · JBI eBooks · doi:10.46658/jbimes-20-04 · Cited by 508 · see citing works
Enteral tube feeding for older people with advanced dementia
Sampson, E. L., Candy, B., & Jones, L. (2009) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd007209.pub2 · Cited by 438 · see citing works
Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus
Sudore, R. L., Heyland, D. K., Lum, H. D., Rietjens, J. A. C., Korfage, I. J., Ritchie, C. S., Hanson, L. C., Meier, D. E., Pantilat, S. Z., Lorenz, K., et al. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2017.08.025 · Cited by 355 · see citing works
Advance care planning in dementia: recommendations for healthcare professionals.
Piers, R., Albers, G., Gilissen, J., De Lepeleire, J., Steyaert, J., Van Mechelen, W., Steeman, E., Dillen, L., Vanden Berghe, P., & Van den Block, L. (2018) · BMC Palliative Care · doi:10.1186/s12904-018-0332-2 · Cited by 254 · see citing works
Dixon, J., Karagiannidou, M., & Knapp, M. R. J. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2017.04.009 · Cited by 245 · see citing works
PALLIATIVE CARE FOR OLDER PEOPLE: BETTER PRACTICES
Lipman, A. G. (2012) · Journal of Pain & Palliative Care Pharmacotherapy · doi:10.3109/15360288.2011.650361 · Cited by 223 · see citing works
Robinson, L. A., Dickinson, C., Rousseau, N., Beyer, F. R., Clark, A., Hughes, J. C., Howel, D., & Exley, C. (2011) · Age and Ageing · doi:10.1093/ageing/afr148 · Cited by 221 · see citing works
Factors Associated with Initiation of Advance Care Planning in Dementia: A Systematic Review
van der Steen, J. T., van Soest‐Poortvliet, M. C., Hallie-Heierman, M., Onwuteaka-Philipsen, B. D., Deliëns, L., de Boer, M. E., den Block, L. V., van Uden, N., Hertogh, C. M. P. M., & de Vet, H. C. W. (2014) · Journal of Alzheimer s Disease · doi:10.3233/jad-131967 · Cited by 204 · see citing works
Advance care planning for people with dementia: a review
Dening, K. H., Jones, L., & Sampson, E. L. (2011) · International Psychogeriatrics · doi:10.1017/s1041610211001608 · Cited by 177 · see citing works
Sellars, M., Chung, O. S., Nolte, L., Tong, A., Pond, D. C., Fetherstonhaugh, D., McInerney, F., Sinclair, C., & Detering, K. M. (2018) · Palliative Medicine · doi:10.1177/0269216318809571 · Cited by 173 · see citing works
Palliative care for older people : better practices
HALL, S. L. (2011) · World Health Organization, Regional Office for Europe eBooks · Cited by 169 · see citing works
Brazil, 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
Tilburgs, B., Vernooij-Dassen, M., Koopmans, R., van Gennip, H., Engels, Y., & Perry, M. (2018) · PLoS ONE · doi:10.1371/journal.pone.0198535 · Cited by 119 · see citing works
Alzheimer's disease: The next frontier—Special Report 2017
Karlawish, J. H., Jack, C. R., Rocca, W. A., Snyder, H. M., & Carrillo, M. C. (2017) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2017.02.006 · Cited by 114 · see citing works
Advance care planning in dementia: recommendations for healthcare professionals
Harrison Dening, K., Sampson, E. L., & De Vries, K. (2019) · Palliative Care: Research and Treatment · doi:10.1177/1178224219826579 · Cited by 114 · see citing works
Mignani, V., Ingravallo, F., Mariani, E., & Chattat, R. (2017) · Clinical Interventions in Aging · doi:10.2147/cia.s128937 · Cited by 105 · see citing works
End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia
Jones, K., Birchley, G., Huxtable, R., Clare, L., Walter, T., & Dixon, J. (2016) · Dementia · doi:10.1177/1471301216676121 · Cited by 102 · see citing works
Mitchell, S. L., Shaffer, M. L., Cohen, S., Hanson, L. C., Habtemariam, D., & Volandes, A. E. (2018) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2018.1506 · Cited by 97 · see citing works
Dening, K. H., King, M., Jones, L., Vickerstaff, V., & Sampson, E. L. (2016) · PLoS ONE · doi:10.1371/journal.pone.0161142 · Cited by 95 · see citing works
Tilburgs, B., Vernooij-Dassen, M. J. F. J., Koopmans, R. T. C. M., Weidema, M. E., Perry, M., & Engels, Y. (2018) · BMC Geriatrics · doi:10.1186/s12877-018-0872-6 · Cited by 95 · see citing works
How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change
Gilissen, J., Pivodic, L., Gastmans, C., Stichele, R. V., Deliëns, L., Breuer, E., & den Block, L. V. (2018) · BMC Geriatrics · doi:10.1186/s12877-018-0723-5 · Cited by 94 · see citing works
Self-citationUmoquit, M. J., Tso, P., Burchett, H., & Dobrow, M. (2011) · BMC Medical Research Methodology · doi:10.1186/1471-2288-11-11 · Cited by 82 · see citing works
Aasmul, I., Husebo, B. S., Sampson, E. L., & Flo, E. (2018) · Frontiers in Psychology · doi:10.3389/fpsyg.2018.02284 · Cited by 70 · see citing works
Beck, E., McIlfatrick, S., Hasson, F., & Leavey, G. (2016) · Journal of Clinical Nursing · doi:10.1111/jocn.13690 · Cited by 66 · see citing works
Ryan, T., M-Amen, K., & McKeown, J. (2017) · Annals of Palliative Medicine · doi:10.21037/apm.2017.06.15 · Cited by 66 · see citing works
Investigating what works to support family carers of people with dementia: a rapid realist review
Parkinson, M., Carr, S. M., Rushmer, R. K., & Abley, C. (2016) · Journal of Public Health · doi:10.1093/pubmed/fdw100 · Cited by 59 · see citing works
Arcand, M. (2015) · PubMed Central · Cited by 58 · see citing works
State of advance care planning research: A descriptive overview of systematic reviews
Jiménez, G., Tan, W. S., Virk, A., Low, C. K., Car, J., & Ho, A. H. Y. (2018) · Palliative & Supportive Care · doi:10.1017/s1478951518000500 · Cited by 58 · see citing works
Carter, G., McLaughlin, D., Kernohan, G. W., Hudson, P., Clarke, M. J., Froggatt, K. A., Passmore, P., & Brazil, K. (2018) · Journal of Advanced Nursing · doi:10.1111/jan.13576 · Cited by 57 · see citing works
Beck, E., McIlfatrick, S., Hasson, F., & Leavey, G. (2015) · Dementia · doi:10.1177/1471301215604997 · Cited by 54 · see citing works
Bryant, J., Turon, H., Waller, A. E., Freund, M., Mansfield, E. L., & Sanson‐Fisher, R. (2018) · Palliative Medicine · doi:10.1177/0269216318801750 · Cited by 54 · see citing works
Petriwskyj, A. M., Gibson, A. F., Parker, D., Banks, S., Andrews, S., & Robinson, A. J. (2014) · International Journal of Evidence-Based Healthcare · doi:10.1097/xeb.0000000000000002 · Cited by 52 · see citing works
Ashton, S., Roe, B. H., Jack, B., & McClelland, B. (2014) · Dementia · doi:10.1177/1471301214548521 · Cited by 51 · see citing works
Challenges in implementing an advance care planning programme in long-term care
McGlade, C., Daly, E., McCarthy, J., Cornally, N., Weathers, E., Ó’Caoimh, R., & Molloy, D. W. (2016) · Nursing Ethics · doi:10.1177/0969733016664969 · Cited by 51 · see citing works
Advance Care Planning in Community-Dwelling Patients With Dementia
Givens, J. L., Sudore, R. L., Marshall, G. A., Dufour, A. B., Kopits, I. M., & Mitchell, S. L. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2017.12.473 · Cited by 50 · see citing works
Arcand, M. (2015) · PubMed · Cited by 49 · see citing works
Goodman, C., Froggatt, K. A., Amador, S., et al. (2015) · BMC Palliative Care · doi:10.1186/s12904-015-0040-0 · Cited by 49 · see citing works
Self-citationConsensus views on advance care planning for dementia: a Delphi study
Sinclair, J. B., Oyebode, J. R., & Owens, R. G. (2015) · Health & Social Care in the Community · doi:10.1111/hsc.12191 · Cited by 42 · see citing works
Advancing research on advance care planning in dementia
den Block, L. V. (2019) · Palliative Medicine · doi:10.1177/0269216319826411 · Cited by 35 · see citing works
Shukla, S. K., Yadav, H. K., Rastogi, A., et al. (2010) · Czech Journal of Genetics and Plant Breeding · doi:10.17221/96/2009-cjgpb · Cited by 33 · see citing works
A Review of Advance Care Planning Programs in Long-Term Care Homes: Are They Dementia Friendly?
Wickson‐Griffiths, A., Kaasalainen, S., Ploeg, J., & McAiney, C. A. (2014) · Nursing Research and Practice · doi:10.1155/2014/875897 · Cited by 31 · see citing works
Advance care planning and palliative medicine in advanced dementia: a literature review
Jethwa, K. D., & Onalaja, O. A. (2015) · BJPsych Bulletin · doi:10.1192/pb.bp.114.046896 · Cited by 28 · see citing works
Family involvement in decision making for people with dementia in residential aged care
Petriwskyj, A. M., Gibson, A. F., Parker, D., et al. (2014) · International Journal of Evidence-Based Healthcare · doi:10.1097/xeb.0000000000000003 · Cited by 25 · see citing works
Read, S. T., Toye, C. M., & Wynaden, D. (2018) · Dementia · doi:10.1177/1471301218784806 · Cited by 25 · see citing works
Advance care planning for people with dementia: Ordinary everyday conversations
de Vries, K., & Drury-Ruddlesden, J. (2018) · Dementia · doi:10.1177/1471301218764169 · Cited by 21 · see citing works
Advance care planning for people living with dementia
Brooke, J. M., & Kirk, M. (2014) · British Journal of Community Nursing · doi:10.12968/bjcn.2014.19.10.490 · Cited by 17 · see citing works
Lo, T. J., Ha, N. H. L., Ng, C. J., Tan, G., Koh, H. M., & Yap, P. L. K. (2016) · International Psychogeriatrics · doi:10.1017/s1041610216001903 · Cited by 15 · see citing works
Enteral tube feeding for older people with advanced dementia (Review)
El, S., Candy, B., & Jones, L. (2009) · Medical Entomology and Zoology · Cited by 13 · see citing works
Jung, J. H., Kim, M. J., Choi, S., Han, N. Y., Park, J. E., Park, H. Y., Han, J. W., Lee, D. Y., & Park, H. Y. (2017) · Psychiatry Investigation · doi:10.4306/pi.2017.14.6.779 · Cited by 11 · see citing works
KATWA, A., Jenner, C., MacDonald, K., & Barnett, N. L. (2018) · Dementia · doi:10.1177/1471301218788137 · Cited by 10 · see citing works
Mitchell, S. L., Shaffer, M. L., Cohen, S., et al. (2018) · Innovation in Aging · doi:10.1093/geroni/igy023.1933 · Cited by 4 · see citing works
Advance care plans for CPR or mechanical ventilation in patients with dementia
Westenhaver, T. F., Krassa, T. J., Bonner, G. J., & Wilkie, D. J. (2010) · The Nurse Practitioner · doi:10.1097/01.npr.0000390436.13252.81 · Cited by 2 · see citing works
Dying in care homes, when advance care planning requires wraparound care
Goodman, C. (2018) · University of Hertfordshire Research Archive (University of Hertfordshire) · doi:10.1177/0269216317751799 · Cited by 2 · see citing works
Self-citationAdvance care planning for people with dementia
Heath, H. B. M. (2016) · Nursing Older People · doi:10.7748/nop.28.5.14.s20 · Cited by 1 · see citing works
Flagged first, then by citations
Research works printed but not linked: 4
- Dixon et al., 2018 ; Jung et al., 2017 ; Mignani et al., 2017 ; Van Der Steen et al., 2014b ). Some advocated ongoing review of ACPs ( Ryan et al., 2017 ;
- 473&atitle=Advance+Care+Planning+in+ Community-Dwelling+Patients+With+Dementia&stitle=J.+Pain+Symptom+ Manage.&title=Journal+of+Pain+and+Symptom+Management&volume= 55&issue=4&spage=1105&epage=1112&aulast=Givens&aufirst=Jane+L.&auinit=J.L. &aufull=Givens+J.L.&coden=JPSME&isbn=&pages=1105-1112&date=2018&auinit1= J&auinitm=L .
- Petriwskyj, A., Gibson, A., Parker, D., Banks, S., Andrews, S., Robinson, A., 2014a. Family involvement in decision making for people with dementia in residen- tial aged care: a systematic review of quantitative literature. Int. J. Evid. Based. Healthc. 12, 64-86. doi: 10.1097/XEB.0 0 0 0 0 0 0 0 0 0 0 0 0 0 · DOI
- j4008 . · DOI · Paper page
Cited by
Sorted by citations
Marijnissen, R. M., Chambaere, K., & Oude Voshaar, R. C. (2022) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2022.857131 · Cited by 25 · see citing works
Vellani, S., Puts, M., Iaboni, A., & McGilton, K. S. (2022) · PLoS ONE · doi:10.1371/journal.pone.0266826 · Cited by 18 · see citing works
“As a result, those living with dementia often experience inadequate end-of-life care [2, 9].”
BackgroundGreene, L., Brain, J., Watkins, P., Kafadar, A. H., Sabatini, S., Blundell, B., Bothe, E., Harper, K., Hersh, D., Morrisby, C., et al. (2026) · The Gerontologist · doi:10.1093/geront/gnaf275 · Cited by 9 · see citing works
- Authors
- Wendrich-van Dael, A., Bunn, F., Lynch, J., Pivodic, L., Van den Block, L., & Goodman, C.
- Affiliations
- University of Hertfordshire (GB)
- Vrije Universiteit Brussel (BE)
- Venue
- International Journal of Nursing Studies
- Publisher
- Elsevier BV
- Published
- 2020-07
- Volume
- 107
- Pages
- 103576
- ISSN
- 0020-7489 (ISSN-L)
- OpenAlex
- W3012382009
- Cited by
- 192
- References
- 65
- Citations by year
- 2026: 22 · 2025: 40 · 2024: 39 · 2023: 29 · 2022: 39 · 2021: 19 · 2020: 4
- FWCI
- 3.81
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- International Journal of Nursing Studies (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- University of Hertfordshire Research Archive (University of Hertfordshire) (acceptedVersion)
- Ghent University Academic Bibliography (Ghent University) (submittedVersion, cc-by-nc-nd)
- University of Hertfordshire Research Archive (University of Hertfordshire) (submittedVersion, cc-by-nc-nd)
- University of Hertfordshire Research Archive (University of Hertfordshire) (submittedVersion)
- VUBIR (Vrije Universiteit Brussel) (submittedVersion)
- Funders
- National Institute for Health and Care Research
- University of Hertfordshire (676265, H2020-MSCA-ITN-2015)
- Fonds Wetenschappelijk Onderzoek
- 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 › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- advance care planning, dementia, end-of-life care, caregiver experiences, healthcare professional perspectives, decision-making capacity, hospitalization, patient preferences, caregiver education
- MeSH terms
- Dementia, Humans, Palliative Care, Advance Care Planning
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
