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Attitudes toward advance care planning among persons with dementia and their caregivers

Published online by Cambridge University Press:  16 July 2019

Corinne Pettigrew ,
Rostislav Brichko ,
Betty Black ,
Maureen K. O’Connor ,
Mary Guerriero Austrom ,
Maisha T. Robinson ,
Allison Lindauer ,
Raj C. Shah ,
Guerry M. Peavy  and
Kayla Meyer
...Show all authors
Corinne Pettigrew*
Affiliation:
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA
Rostislav Brichko
Affiliation:
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA
Betty Black
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, MD, USA
Maureen K. O’Connor
Affiliation:
Department of Neurology, Boston University School of Medicine, Boston, MA, USA
Mary Guerriero Austrom
Affiliation:
Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA
Maisha T. Robinson
Affiliation:
Department of Neurology, Mayo Clinic, Jacksonville, FL, USA
Allison Lindauer
Affiliation:
Department of Neurology, Layton Aging and Alzheimer’s Disease Center, Oregon Health & Science University, Portland, OR, USA
Raj C. Shah
Affiliation:
Department of Family Medicine and the Rush Alzheimer’s Disease Center, Rush University Medical Center, Chicago, IL, USA
Guerry M. Peavy
Affiliation:
Department of Neurosciences, University of California, San Diego School of Medicine, La Jolla, CA, USA
Kayla Meyer
Affiliation:
Department of Neurology, University of Kansas Medical Center, Fairway, KS, USA
Frederick A. Schmitt
Affiliation:
Department of Neurology & Sanders-Brown Center on Aging, University of Kentucky, Lexington, KY, USA
Jennifer H. Lingler
Affiliation:
Department of Health & Community Systems, University of Pittsburgh School of Nursing, Pittsburgh, PA, USA
Kimiko Domoto-Reilly
Affiliation:
Department of Neurology, University of Washington, Seattle, WA, USA
Dorothy Farrar-Edwards
Affiliation:
Department of Kinesiology-Occupational Therapy, University of Wisconsin Madison School of Education, Madison, WI, USA
Marilyn Albert
Affiliation:
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA
*
Correspondence should be addressed to: Corinne Pettigrew, Department of Neurology, Johns Hopkins School of Medicine, 1620 McElderry St., Reed Hall 1, Baltimore, MD 21205, USA. Phone: 410-614-0363; Fax: 410-502-2189. Email: cpettigrew@jhmi.edu.
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Abstract

Objectives:

To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.

Design:

Cross-sectional survey.

Setting:

13 geographically dispersed Alzheimer’s Disease Centers across the United States.

Participants:

431 racially diverse caregivers of persons with dementia.

Measurements:

Survey on “Care Planning for Individuals with Dementia.”

Results:

The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.

Conclusions:

Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.

Keywords

dementiaAlzheimer’s diseaseadvance care planningcare preferencesraceend-of-life care
Type
Original Research Article
Information
International Psychogeriatrics , Volume 32 , Issue 5: Issue Theme: Challenges and Facilitators for Diagnosis and Treatment of Dementia , May 2020 , pp. 585 - 599
Copyright
© International Psychogeriatric Association 2019

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References

Alzheimer’s Association. (2019). 2019 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 15, 321–387.CrossRefGoogle Scholar
Beekly, D. L.et al. (2007). The National Alzheimer’s Coordinating Center (NACC) database: the Uniform Data Set. Alzheimer Disease & Associated Disorders, 21, 249–258. doi: 10.1097/WAD.0b013e318142774e.CrossRefGoogle ScholarPubMed
Bonner, G. J., Wang, E., Wilkie, D. J., Ferrans, C. E., Dancy, B. and Watkins, Y. (2014). Advance care treatment plan (ACT-Plan) for African American family caregivers: a pilot study. Dementia, 13, 79–95. doi: 10.1177/1471301212449408.CrossRefGoogle ScholarPubMed
Brinkman-Stoppelenburg, A., Rietjens, J. A. and Van der Heide, A. (2014). The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine, 28, 1000–1025. doi: 10.1177/0269216314526272.CrossRefGoogle ScholarPubMed
Bryant, J., Turon, H., Waller, A., Freund, M., Mansfield, E. and Sanson-Fisher, R. (2018). Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: a systematic review. Palliative Medicine, doi: 10.1177/0269216318801750.CrossRefGoogle Scholar
Choi, S., Kim, M. and McDonough, I. M. (2018). Do older adults with Alzheimer’s disease engage in estate planning and advance care planning preparation?. Aging and Mental Health, 1–8. doi: 10.1080/13607863.2018.1461192.CrossRefGoogle Scholar
Connolly, A., Sampson, E. L. and Purandare, N. (2012). End-of-life care for people with dementia from ethnic minority groups: a systematic review. Journal of the American Geriatrics Society, 60, 351–360. doi: 10.1111/j.1532-5415.2011.03754.x.CrossRefGoogle ScholarPubMed
Cotter, V. T., Spriggs, M. and Razzak, R. (2018). Advance care planning in early stage dementia. The Journal for Nurse Practitioners, 14, 142–147. doi: 10.1016/j.nurpra.2017.09.016.CrossRefGoogle Scholar
Dening, K. H., Jones, L. and Sampson, E. L. (2011). Advance care planning for people with dementia: a review. International Psychogeriatrics, 23, 1535–1551. doi: 10.1017/S1041610211001608.CrossRefGoogle ScholarPubMed
Desin, P. J., Caban-Holt, A. M., Abner, E. L., Van Eldik, L. J. and Schmitt, F. A. (2016). Factors associated with unmet needs among African-American dementia care providers. Journal of Gerontology and Geriatric Research, 5, 267. doi: 10.4172/2167-7182.1000267.Google ScholarPubMed
Dickinson, C., Bamford, C., Exley, C., Emmett, C., Hughes, J. and Robinson, L. (2013). Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning. International Psychogeriatrics, 25, 2011–2021. doi: 10.1017/S1041610213001531.CrossRefGoogle ScholarPubMed
Dixon, J., Karagiannidou, M. and Knapp, M. (2018). The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: a systematic review and critical discussion. Journal of Pain and Symptom Management, 55, 132–150 e1. doi: 10.1016/j.jpainsymman.2017.04.009.CrossRefGoogle ScholarPubMed
Engel, S. E., Kiely, D. K. and Mitchell, S. L. (2006). Satisfaction with end-of-life care for nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 54, 1567–1572. doi: 10.1111/j.1532-5415.2006.00900.x.CrossRefGoogle ScholarPubMed
Givens, J. L., Jones, R. N., Shaffer, M. L., Kiely, D. K. and Mitchell, S. L. (2010). Survival and comfort after treatment of pneumonia in advanced dementia. Archives of Internal Medicine, 170, 1102–1107. doi: 10.1001/archinternmed.2010.181.CrossRefGoogle ScholarPubMed
Givens, J. L., Sudore, R. L., Marshall, G. A., Dufour, A. B., Kopits, I. and Mitchell, S. L. (2018). Advance care planning in community-dwelling patients with dementia. Journal of Pain and Symptom Management, 55, 1105–1112. doi: 10.1016/j.jpainsymman.2017.12.473.CrossRefGoogle ScholarPubMed
Gozalo, P.et al . (2011). End-of-life transitions among nursing home residents with cognitive issues. New England Journal of Medicine, 365, 12–21. doi: 10.1056/NEJMsa1100347.CrossRefGoogle ScholarPubMed
Hirschman, K. B., Kapo, J. M. and Karlawish, J. H. (2008). Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Disease and Associated Disorders, 22, 293–298. doi: 10.1097/WAD.0b013e318169d669.CrossRefGoogle ScholarPubMed
Hirschman, K. B., Xie, S. X., Feudtner, C. and Karlawish, J. H. (2004). How does an Alzheimer’s disease patient’s role in medical decision making change over time? Journal of Geriatric Psychiatry and Neurology, 17, 55–60. doi: 10.1177/0891988704264540.CrossRefGoogle ScholarPubMed
Hong, M., Yi, E. H., Johnson, K. J. and Adamek, M. E. (2018). Facilitators and barriers for advance care planning among ethnic and racial minorities in the U.S.: a systematic review of the current literature. Journal of Immigrant and Minority Health, 20, 1277–1287. doi: 10.1007/s10903-017-0670-9.CrossRefGoogle ScholarPubMed
Hopp, F. P. and Duffy, S. A. (2000). Racial variations in end-of-life care. Journal of the American Geriatrics Society, 48, 658–663. doi: 10.1111/j.1532-5415.2000.tb04724.x.CrossRefGoogle ScholarPubMed
Houben, C. H. M., Spruit, M. A., Groenen, M. T. J., Wouters, E. F. M. and Janssen, D. J. A. (2014). Efficacy of advance care planning: a systematic review and meta-analysis. Journal of the American Medical Directors Association, 15, 477–489. doi: 10.1016/j.jamda.2014.01.008.CrossRefGoogle ScholarPubMed
Jeznach, A., Tuokko, H. A., Garcia-Barrera, M. A. and Stajduhar, K. (2015). Findings on advance care plans among cognitively impaired older adults. Canadian Journal on Aging, 34, 165–175. doi: 10.1017/S0714980815000021.CrossRefGoogle ScholarPubMed
Jones, K., Birchley, G., Huxtable, R., Clare, L., Walter, T. and Dixon, J. (2016). End of life care: a scoping review of experiences of advance care planning for people with dementia. Dementia. doi: 10.1177/1471301216676121.CrossRefGoogle Scholar
Kwak, J. and Haley, W. E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerontologist, 45, 634–641. doi: 10.1093/geront/45.5.634.CrossRefGoogle ScholarPubMed
Lai, M., Jeon, Y.-H. and McKenzie, H. (2019). The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review. International Psychogeriatrics, doi: 10.1017/S104161021900005X.CrossRefGoogle Scholar
Lingler, J. H.et al. (2008). Frequency and correlates of advance planning among cognitively impaired older adults. The American Journal of Geriatric Psychiatry, 16, 643–649. doi: 10.1097/JGP.0b013e31816b7324.CrossRefGoogle ScholarPubMed
Mitchell, S. L., Teno, J. M., Roy, J., Kabumoto, G. and Mor, V. (2003). Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. Journal of the American Medical Association, 290, 73–80. doi: 10.1001/jama.290.1.73.CrossRefGoogle ScholarPubMed
Mitchell, S. L.et al. (2012). Advanced dementia: state of the art and priorities for the next decade. Annals of Internal Medicine, 156, 45–51. doi: 10.7326/0003-4819-156-1-201201030-00008.CrossRefGoogle ScholarPubMed
Morris, J. C. (1993). The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology, 43, 2412–2414. doi: 10.1212/WNL.43.11.2412-a.CrossRefGoogle ScholarPubMed
Morris, J. C.et al . (2006). The Uniform Data Set (UDS): clinical and cognitive variables and descriptive data from Alzheimer Disease Centers. Alzheimer’s Disease & Associated Disorders, 20, 210–216. doi: 10.1097/01.wad.0000213865.09806.92.CrossRefGoogle ScholarPubMed
Morrison, R. S. and Meier, D. E. (2004). High rates of advance care planning in New York City’s elderly population. Archives of Internal Medicine, 164, 2421–2426. doi: 10.1001/archinte.164.22.2421.CrossRefGoogle ScholarPubMed
Moss, K. O., Deutsch, N. L., Hollen, P. J., Rovnyak, V. G., Williams, I. C. and Rose, K. M. (2018a). End-of-life plans for African American older adults with dementia. The American Journal of Hospice & Palliative Care, 35, 1314–1322. doi: 10.1177/1049909118761094.CrossRefGoogle ScholarPubMed
Moss, K. O., Deutsch, N. L., Hollen, P. J., Rovnyak, V. G., Williams, I. C. and Rose, K. M. (2018b). Understanding end-of-life decision-making terminology among African American older adults. Journal of Gerontological Nursing, 44, 33–40. doi: 10.3928/00989134-20171002-02.CrossRefGoogle ScholarPubMed
Noh, H. and Kwak, J. (2018). End-of-life decision making for persons with dementia: proxies’ perception of support. Dementia, 17, 478–493. doi: 10.1177/1471301216648473.CrossRefGoogle Scholar
Ryan, T., Amen, K. M. and McKeown, J. (2017). The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature. Annals of Palliative Medicine, 6, 380–389. doi: 10.21037/apm.2017.06.15.CrossRefGoogle ScholarPubMed
Sanders, J. J., Robinson, M. T. and Block, S. D. (2016). Factors impacting advance care planning among African Americans: results of a systematic integrated review. Journal of Palliative Medicine, 19, 202–227. doi: 10.1089/jpm.2015.0325.CrossRefGoogle ScholarPubMed
Teno, J. M., Gozalo, P., Mitchell, S. L., Kuo, S., Fulton, A. T. and Mor, V. (2012). Feeding tubes and the prevention or healing of pressure ulcers. Archives of Internal Medicine, 172, 697–701. doi: 10.1001/archinternmed.2012.1200.Google ScholarPubMed
Teno, J. M., Mor, V., DeSilva, D., Kabumoto, G., Roy, J., and Wetle, T. (2002). Use of feeding tubes in nursing home residents with severe cognitive impairment. Journal of the American Medical Association, 287, 3211–3212. doi: 10.1001/jama.287.24.3206.CrossRefGoogle ScholarPubMed
Tjia, J., Dharmawardene, M. and Givens, J. L. (2018). Advance directives among nursing home residents with mild, moderate, and advanced dementia. Journal of Palliative Medicine, 21, 16–21. doi: 10.1089/jpm.2016.0473.CrossRefGoogle ScholarPubMed
Triplett, P.et al. (2008). Content of advance directives for individuals with advanced dementia. Journal of Aging and Health, 20, 583–596. doi: 10.1177/0898264308317822.CrossRefGoogle ScholarPubMed
U.S. Census Bureau. (2011). Overview of race and Hispanic origin: 2010 Census briefs. Retrieved from https://www.census.gov/prod/cen2010/briefs/c2010br-02.pdfGoogle Scholar
Weintraub, S.et al. (2009). The Alzheimer’s Disease Centers’ Uniform Data Set (UDS): the neuropsychological test battery. Alzheimer Disease & Associated Disorders, 23, 91–101. doi: 10.1097/WAD.0b013e318191c7dd.CrossRefGoogle Scholar
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