Caregiving in Dementia

doi:10.1017/9781108985055.026

Chapter 26 - Caregiving in Dementia

from Section 3 - Treatment of the Dementias

Published online by Cambridge University Press: 17 November 2025

Jennifer Merrilees ,

Sarah Dulaney and

Robert W. Levenson

Edited by

Bruce L. Miller and

Bradley F. Boeve

Show author details

Bruce L. Miller: Affiliation:
University of California, San Francisco
Bradley F. Boeve: Affiliation:
Mayo Clinic, Minnesota

Book contents

Get access

Summary

This chapter focuses on the challenges and experiences of caregiving in dementia, emphasizing the importance of protecting caregiver health and well-being. It discusses effective communication strategies, provides a list of useful web-based educational resources for caregivers, and explores direct and indirect caregiver support interventions. The chapter highlights the need for better support and resources for caregivers, including access to respite care and palliative care services. It also provides strategies for healthcare providers to better engage and support caregivers. Overall, the chapter emphasizes the need to prioritize caregiver health and well-being in dementia care to improve outcomes for both caregivers and individuals with dementia.

Keywords

caregiving dementia caregiver support effective communication partnership care coordination advance care planning respite care palliative care caregiver health family caregivers caregiver education

Information

Type: Chapter
Information: The Behavioral Neurology of Dementia , pp. 447 - 465

DOI: https://doi.org/10.1017/9781108985055.026 [Opens in a new window]

Publisher: Cambridge University Press

Print publication year: 2025

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.)

Book purchase

Temporarily unavailable

References

2021 Alzheimer’s disease facts and figures. Alzheimers Dement, 2021. 17(3):327–406.10.1002/alz.12328CrossRef Google Scholar

Plassman, B.L., et al., Prevalence of dementia in the United States: the aging, demographics, and memory study. Neuroepidemiology, 2007. 29(1-2):125–132.10.1159/000109998CrossRef Google Scholar PubMed

Redfoot, D., Feinberg, L., Houser, A., The aging of the baby boom and the growing care gap: a look at future declines in the availability of family caregivers. Washington, DC: AARP Public Policy Institute, Insight on the Issues 85, 2013.Google Scholar

Parker, K., Patten, E., The sandwich generation: rising financial burdens for middle-aged Americans. [Report] Washington, DC: Pew Research Center, 2013:Google Scholar

Seeley, W.W., et al., Neurodegenerative diseases target large-scale human brain networks. Neuron, 2009. 62(1):42–52.10.1016/j.neuron.2009.03.024CrossRef Google Scholar PubMed

Langa, K.M., et al., National estimates of the quantity and cost of informal caregiving for the elderly with dementia. J Gen Intern Med, 2001. 16(11):770–778.10.1111/j.1525-1497.2001.10123.xCrossRef Google Scholar PubMed

Schulz, R., et al., Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist, 1995. 35(6):771–791.10.1093/geront/35.6.771CrossRef Google Scholar PubMed

Schulz, R., Beach, S.R., Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA, 1999. 282(23):2215–2219.10.1001/jama.282.23.2215CrossRef Google Scholar PubMed

Lwi, S.J., et al., Poor caregiver mental health predicts mortality of patients with neurodegenerative disease. Proc Natl Acad Sci U S A, 2017. 114(28):7319–7324.10.1073/pnas.1701597114CrossRef Google Scholar PubMed

Gaugler, J.E., Kane, R.L., Chapter 1 – Introduction: Family Caregiving in the New Normal. In Gaugler, J.E., Kane, R.L., eds. Family Caregiving in the New Normal. San Diego: Academic Press, 2015; pp. 1–13.Google Scholar

Lopez, R.P., et al., Managing shame: a grounded theory of how stigma manifests in families living with dementia. J Am Psychiatr Nurses Assoc, 2020. 26(2):181–188.10.1177/1078390319832965CrossRef Google Scholar PubMed

Epps, F., Rose, K.M., Lopez, R.P., Who’s your family?: African American caregivers of older adults with dementia. Res Gerontol Nurs, 2019. 12(1):20–26.10.3928/19404921-20181212-04CrossRef Google Scholar PubMed

Kelley, A.S., et al., The burden of health care costs for patients with dementia in the last 5 years of life. Ann Intern Med, 2015. 163(10):729–736.10.7326/M15-0381CrossRef Google Scholar PubMed

Hurd, M.D., et al., Monetary costs of dementia in the United States. N Engl J Med, 2013. 368(14):1326–1334.10.1056/NEJMsa1204629CrossRef Google Scholar PubMed

Adelman, R.D., et al., Caregiver burden: a clinical review. JAMA, 2014. 311(10):1052–1060.10.1001/jama.2014.304CrossRef Google Scholar PubMed

Shim, B., et al., Finding meaning in caring for a spouse with dementia. Appl Nurs Res, 2013. 26(3):121–126.10.1016/j.apnr.2013.05.001CrossRef Google Scholar PubMed

Yu, D.S.F., Cheng, S.T., Wang, J., Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. Int J Nurs Stud, 2018. 79:1–26.10.1016/j.ijnurstu.2017.10.008CrossRef Google Scholar PubMed

Erikson, E.H., Erikson, J., Kivnick, H., Vital Involvement in Old Age. New York: Norton, 1986.Google Scholar

Schulz, R., et al., Predictors and consequences of perceived lack of choice in becoming an informal caregiver. Aging Ment Health, 2012. 16(6):712–721.10.1080/13607863.2011.651439CrossRef Google Scholar PubMed

Wolff, J.L., et al., A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med, 2016. 176(3):372–379.10.1001/jamainternmed.2015.7664CrossRef Google Scholar PubMed

Pham, H.H., et al., Primary care physicians’ links to other physicians through Medicare patients: the scope of care coordination. Ann Intern Med, 2009. 150(4):236–242.10.7326/0003-4819-150-4-200902170-00004CrossRef Google Scholar

Bronskill, S.E., et al., Trajectories of health system use and survival for community-dwelling persons with dementia: a cohort study. BMJ Open, 2020. 10(7):e037485.10.1136/bmjopen-2020-037485CrossRef Google Scholar PubMed

Godard-Sebillotte, C., et al., Impact of health service interventions on acute hospital use in community-dwelling persons with dementia: A systematic literature review and meta-analysis. PLoS One, 2019. 14(6):e0218426.10.1371/journal.pone.0218426CrossRef Google Scholar PubMed

Weiss, J., et al., Critical workforce gaps in dementia education and training. J Am Geriatr Soc, 2020. 68(3):625–629.10.1111/jgs.16341CrossRef Google Scholar PubMed

Watson, J.L., et al., Obstacles and opportunities in Alzheimer’s clinical trial recruitment. Health Aff (Millwood), 2014. 33(4):574–579.10.1377/hlthaff.2013.1314CrossRef Google Scholar PubMed

National Institute on Aging, Together We Can Make the Difference. National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research. Washington, DC: National Institutes of Health, 2018.Google Scholar

Gilmore-Bykovskyi, A., et al., Underreporting of gender and race/ethnicity differences in NIH-funded dementia caregiver support interventions. Am J Alzheimers Dis Other Demen, 2018. 33(3):145–152.10.1177/1533317517749465CrossRef Google Scholar

Rote, S.M., et al., Caregiving across diverse populations: new evidence from the National Study of Caregiving and Hispanic EPESE. Innov Aging, 2019. 3(2):igz033.10.1093/geroni/igz033CrossRef Google Scholar PubMed

Canevelli, M., et al., The issue of dementia in migrants and ethnic minorities: the perspective of national dementia plans. Aging Clin Exp Res, 2021. 33(10):2703–2708.10.1007/s40520-019-01340-1CrossRef Google Scholar PubMed

Portacolone, E., et al., Earning the trust of African American communities to increase representation in dementia research. Ethn Dis, 2020. 30(Suppl 2):719–734.10.18865/ed.30.S2.719CrossRef Google Scholar PubMed

Burgdorf, J., et al., Family caregiver factors associated with emergency department utilization among community-living older adults with disabilities. J Prim Care Community Health, 2019. 10:2150132719875636.10.1177/2150132719875636CrossRef Google Scholar PubMed

Schulz, R., Beach, S.R., Friedman, E.M., Caregiving factors as predictors of care recipient mortality. Am J Geriatr Psychiatry, 2021. 29(3):295–303.10.1016/j.jagp.2020.06.025CrossRef Google Scholar PubMed

Kelley, A.S., et al., Residential setting and the cumulative financial burden of dementia in the 7 years before death. J Am Geriatr Soc, 2020. 68(6):1319–1324.10.1111/jgs.16414CrossRef Google Scholar PubMed

Ankuda, C.K., et al., Implications of 2020 Skilled Home Healthcare Payment Reform for Persons with Dementia. J Am Geriatr Soc, 2020. 68(10):2303–2309.10.1111/jgs.16654CrossRef Google Scholar PubMed

Modi H, Orgera K, Grover A. Exploring Barriers to Mental Health Care in the U.S. Washington, DC: AAMC; 2022. https://doi.org/10.15766/rai_a3ewcf9p.Google Scholar

Luth, E.A., et al., Survival in hospice patients with dementia: the effect of home hospice and nurse visits. J Am Geriatr Soc, 2021. 69(6):1529–1538.10.1111/jgs.17066CrossRef Google Scholar PubMed

Harding, R., et al., Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. J Pain Symptom Manage, 2015. 50(4):445–452.10.1016/j.jpainsymman.2015.04.005CrossRef Google Scholar PubMed

Costa-Requena, G., Espinosa Val, M.C., Cristofol, R., Caregiver burden in end-of-life care: advanced cancer and final stage of dementia. Palliat Support Care, 2015. 13(3):583–589.10.1017/S1478951513001259CrossRef Google Scholar PubMed

Clipp, E.C., George, L.K., Dementia and cancer: a comparison of spouse caregivers. Gerontologist, 1993. 33(4):534–541.10.1093/geront/33.4.534CrossRef Google Scholar

Donaldson, C., Tarrier, N., Burns, A., The impact of the symptoms of dementia on caregivers. Br J Psychiatry, 2018. 170(1):62–68.10.1192/bjp.170.1.62CrossRef Google Scholar

Abdollahpour, I., et al., Positive Aspects of Caregiving Questionnaire: a validation study in caregivers of patients with dementia. J Geriatr Psychiatry Neurol, 2017. 30(2):77–83.10.1177/0891988716686831CrossRef Google Scholar

Grossman, M.R., Gruenewald, T.L., Caregiving and perceived generativity: a positive and protective aspect of providing care? Clin Gerontologist, 2017. 40(5):435–447.10.1080/07317115.2017.1317686CrossRef Google Scholar PubMed

Richardson, T.J., et al., Caregiver health: health of caregivers of Alzheimer’s and other dementia patients. Curr Psychiatry Rep, 2013. 15(7):367.10.1007/s11920-013-0367-2CrossRef Google Scholar PubMed

Monin, J.K., Schulz, R., Interpersonal effects of suffering in older adult caregiving relationships. Psychol Aging, 2009. 24(3):681–695.10.1037/a0016355CrossRef Google Scholar PubMed

Coope, B., et al., The prevalence of depression in the carers of dementia sufferers. Int J Geriatr Psychiatry, 1995. 10(3):237–242.10.1002/gps.930100310CrossRef Google Scholar

Cuijpers, P., Depressive disorders in caregivers of dementia patients: a systematic review. Aging Ment Health, 2005. 9(4):325–330.10.1080/13607860500090078CrossRef Google Scholar PubMed

Brodaty, H., Donkin, M., Family caregivers of people with dementia. Dialogues Clin Neurosci, 2009. 11(2):217–228.10.31887/DCNS.2009.11.2/hbrodatyCrossRef Google Scholar PubMed

Joling, K.J., et al., Incidence of depression and anxiety in the spouses of patients with dementia: a naturalistic cohort study of recorded morbidity with a 6-year follow-up. Am J Geriatr Psychiatry, 2010. 18(2):146–153.10.1097/JGP.0b013e3181bf9f0fCrossRef Google Scholar PubMed

Kolanowski, A.M., et al., Spouses of persons with dementia: their healthcare problems, utilization, and costs. Res NursHealth, 2004. 27(5):296–306.Google Scholar

Grafstrom, M., et al., Health and social consequences for relatives of demented and non-demented elderly. a population-based study. J Clin Epidemiol, 1992. 45(8):861–870.10.1016/0895-4356(92)90069-YCrossRef Google Scholar PubMed

Baumgarten, M., et al., Health of family members caring for elderly persons with dementia. A longitudinal study. Ann Intern Med, 1994. 120(2):126–132.10.7326/0003-4819-120-2-199401150-00005CrossRef Google Scholar PubMed

Dura, J.R., Stukenberg, K.W., Kiecolt-Glaser, J.K., Anxiety and depressive disorders in adult children caring for demented parents. Psychol Aging, 1991. 6(3):467–473.10.1037/0882-7974.6.3.467CrossRef Google Scholar PubMed

O’Dwyer, S.T., et al., Suicidal ideation in family carers of people with dementia: a pilot study. Int J Geriatr Psychiatry, 2013. 28(11):1182–118.Google Scholar PubMed

Blazer, D., Geriatric psychiatry. In Hales, R.E., Yudofsky, S.C., Talbott, J.A., eds. The American Psychiatric Press Textbook of Psychiatry, 2nd ed. Washington, DC: American Psychiatric Association, 1994; pp. 1495–1421.Google Scholar

Dassel, K.B., Carr, D.C., Does dementia caregiving accelerate frailty? Findings from the health and retirement study. Gerontologist, 2016. 56(3):444–450.10.1093/geront/gnu078CrossRef Google Scholar PubMed

Vitaliano, P.P., Zhang, J., Scanlan, J.M., Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull, 2003. 129(6):946–972.10.1037/0033-2909.129.6.946CrossRef Google Scholar PubMed

Baumgarten, M., et al., The psychological and physical health of family members caring for an elderly person with dementia. J Clin Epidemiol, 1992. 45(1):61–70.10.1016/0895-4356(92)90189-TCrossRef Google Scholar PubMed

Moritz, D.J., Kasl, S.V., Ostfeld, A.M., The health impact of living with a cognitively impaired elderly spouse: blood pressure, self-rated health, and health behaviors. J Aging Health, 1992. 4(2):244–267.10.1177/089826439200400205CrossRef Google Scholar

Kiecolt-Glaser, J.K., et al., Spousal caregivers of dementia victims: longitudinal changes in immunity and health. Psychosom Med, 1991. 53(4):345–362.10.1097/00006842-199107000-00001CrossRef Google Scholar PubMed

Uchino, B.N., Kiecolt-Glaser, J.K., Cacioppo, J.T., Age-related changes in cardiovascular response as a function of a chronic stressor and social support. J Pers Soc Psychol, 1992. 63(5):839–846.10.1037/0022-3514.63.5.839CrossRef Google Scholar PubMed

Norton, M.C., et al., Greater risk of dementia when spouse has dementia? The Cache County Study. J Am Geriatr Soc, 2010. 58(5):895–900.10.1111/j.1532-5415.2010.02806.xCrossRef Google Scholar PubMed

Wells, J.L., Hua, A.Y., Levenson, R.W., Poor disgust suppression is associated with increased anxiety in caregivers of persons with neurodegenerative disease. J Gerontol B Psychol Sci Soc Sci, 2021. 76(7):1302–1312.10.1093/geronb/gbaa056CrossRef Google Scholar PubMed

Brown, C.L., et al., Emotion recognition and reactivity in persons with neurodegenerative disease are differentially associated with caregiver health. Gerontologist, 2020. 60(7):1233–1243.10.1093/geront/gnaa030CrossRef Google Scholar PubMed

Hua, A.Y., et al., Emotional and cognitive empathy in caregivers of people with neurodegenerative disease: relationships with caregiver mental health. Clin Psychol Sci, 2021. 9(3):449–466.10.1177/2167702620974368CrossRef Google Scholar PubMed

Radloff, L.S., The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Measure, 1977. 1:385–401.10.1177/014662167700100306CrossRef Google Scholar

Williams, R.B. Jr, et al., Type A behavior, hostility, and coronary atherosclerosis. Psychosom Med, 1980. 42:539–549.10.1097/00006842-198011000-00002CrossRef Google Scholar PubMed

Fredrickson, B.L., Levenson, R.W., Positive emotions speed recovery from the cardiovascular sequelae of negative emotions. Cogn Emot, 1998. 12(2):191–220.10.1080/026999398379718CrossRef Google Scholar PubMed

Schulz, R., Visintainer, P., Williamson, G.M., Psychiatric and physical morbidity effects of caregiving. J Gerontol, 1990. 45(5): P 181–191.10.1093/geronj/45.5.P181CrossRef Google Scholar PubMed

Merrilees, J.J., et al., The Care Ecosystem: promoting self-efficacy among dementia family caregivers. Dementia (London), 2020. 19(6):1955–1973.10.1177/1471301218814121CrossRef Google Scholar PubMed

Bernstein, A., et al., The role of care navigators working with people with dementia and their caregivers. J Alzheimers Dis, 2019. 71(1):45–55.10.3233/JAD-180957CrossRef Google Scholar PubMed

Wong, C., et al., The experiences of caregiving: differences between behavioral variant of frontotemporal dementia and Alzheimer disease. Am J Geriatr Psychiatry, 2012. 20(8):724–728.10.1097/JGP.0b013e318233154dCrossRef Google Scholar PubMed

Hinrichsen, G.A., Niederehe, G., Dementia management strategies and adjustment of family members of older patients. Gerontologist, 1994. 34(1):95–102.10.1093/geront/34.1.95CrossRef Google Scholar PubMed

Levenson, R.W., Emotion elicitation with neurological patients. In Coan, J.A., Allen, J.J.B., eds. The Handbook of Emotion Elicitation and Assessment. New York: Oxford University Press, 2007; pp. 158–168.10.1093/oso/9780195169157.003.0011CrossRef Google Scholar

Chen, K.H., et al., Greater experience of negative non-target emotions by patients with neurodegenerative diseases is related to lower emotional well-being in caregivers. Dement Geriatr Cogn Disord, 2017. 44(5-6):245–255.10.1159/000481132CrossRef Google Scholar PubMed

Otero, M.C., Levenson, R.W., Lower visual avoidance in dementia patients is associated with greater psychological distress in caregivers. Dement Geriatr Cogn Disord, 2017. 43(5-6):247–258.10.1159/000468146CrossRef Google Scholar PubMed

Brown, C.L., et al., Empathic accuracy deficits in patients with neurodegenerative disease: association with caregiver depression. Am J Geriatr Psychiatry, 2018. 26(4):484–493.10.1016/j.jagp.2017.10.012CrossRef Google Scholar PubMed

Hooker, K., et al., Mental and physical health of spouse caregivers: the role of personality. Psychol Aging, 1992. 7(3):367–375.10.1037/0882-7974.7.3.367CrossRef Google Scholar PubMed

Lockenhoff, C.E., et al., Five-factor personality traits and subjective health among caregivers: the role of caregiver strain and self-efficacy. Psychol Aging, 2011. 26(3):592–604.10.1037/a0022209CrossRef Google Scholar PubMed

Chunga, R.E., et al., Family caregivers’ distress responses to daily behavioral and psychological symptoms of dementia: the moderating role of relationship quality. Int J Geriatr Psychiatry, 2021. 36(6):822–830.10.1002/gps.5482CrossRef Google Scholar PubMed

Rigby, T., et al., Comparison of the caregiving experience of grief, burden, and quality of life in dementia with Lewy bodies, Alzheimer’s disease, and Parkinson’s disease Dementia. J Alzheimers Dis, 2021. 80(1):421–432.10.3233/JAD-201326CrossRef Google Scholar PubMed

Farina, N., et al., Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimers Dement, 2017. 13(5):572–581.10.1016/j.jalz.2016.12.010CrossRef Google Scholar PubMed

Quinn, C., Toms, G., Influence of positive aspects of dementia caregiving on caregivers’ well-being: a systematic review. Gerontologist, 2019. 59(5):e584–e596.Google Scholar PubMed

Wells, J.L., et al., Neurodegenerative disease caregivers’ 5-HTTLPR genotype moderates the effect of patients’ empathic accuracy deficits on caregivers’ well-being. Am J Geriatr Psychiatry, 2019. 27(10):1046–1056.10.1016/j.jagp.2019.04.009CrossRef Google Scholar PubMed

Belsky, J. Pluess, M., Beyond diathesis stress: differential susceptibility to environmental influences. Psychol Bull, 2009. 135(6):885–908.10.1037/a0017376CrossRef Google Scholar PubMed

Verduyn, P., et al., The Relationship between Self-Distancing and the Duration of Negative and Positive Emotional Experiences in Daily Life. Emotion, 2012.10.1037/a0028289CrossRef Google Scholar PubMed

Levenson, R.W., Carstensen, L.L., Gottman, J.M., Long-term marriage: age, gender and satisfaction. Psychol Aging, 1993. 8(2):301–313.10.1037/0882-7974.8.2.301CrossRef Google Scholar PubMed

Levenson, R.W., Gottman, J.M., Marital interaction: physiological linkage and affective exchange. J Person Soc Psychol, 1983. 45(3):587–597.10.1037/0022-3514.45.3.587CrossRef Google Scholar PubMed

Chen, K.H., et al., Lower activity linkage between caregivers and persons with neurodegenerative diseases is associated with greater caregiver anxiety. Psychophysiology, 2022. 59(8):e14040.10.1111/psyp.14040CrossRef Google Scholar PubMed

Connelly, D.E., et al., Pronoun use during patient-caregiver interactions: associations with caregiver well-being. Dement Geriatr Cogn Disord, 2020. 49(2):1–8.10.1159/000508095CrossRef Google Scholar PubMed

Lwi, S.J., et al., Genuine smiles by patients during marital interactions are associated with better caregiver mental health. J Gerontol B Psychol Sci Soc Sci, 2019. 74(6):975–987.10.1093/geronb/gbx157CrossRef Google Scholar PubMed

Navaie-Waliser, M., et al., When the caregiver needs care: the plight of vulnerable caregivers. Am J Public Health, 2002. 92(3):409–413.10.2105/AJPH.92.3.409CrossRef Google Scholar PubMed

Ory, M.G., et al., Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist, 1999. 39(2):177–185.10.1093/geront/39.2.177CrossRef Google Scholar PubMed

Schulz, R., Martire, L.M., Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry, 2004. 12(3):240–249.10.1097/00019442-200405000-00002CrossRef Google Scholar PubMed

Brodaty, H., et al., Time until institutionalization and death in patients with dementia. Role of caregiver training and risk factors. Arch Neurol, 1993. 50(6):643–650.10.1001/archneur.1993.00540060073021CrossRef Google Scholar PubMed

Jennings, L.A., et al., Unmet needs of caregivers of individuals referred to a dementia care program. J Am Geriatr Soc, 2015. 63(2):282–289.10.1111/jgs.13251CrossRef Google Scholar PubMed

Evertson, L.C., et al., Caregiver outcomes of a dementia care program. Geriatr Nurs, 2021. 42(2):447–459.10.1016/j.gerinurse.2021.02.003CrossRef Google Scholar PubMed

Svendsboe, E., et al., Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer’s disease. Int J Geriatr Psychiatry, 2016. 31(9):1075–1083.10.1002/gps.4433CrossRef Google Scholar PubMed

Wong, C., et al., The experience of caregiving: differences between behavioral variant of frontotemporal dementia and Alzheimer disease. Am J Geriatr Psychiatry, 2012. 20(8):724–748.10.1097/JGP.0b013e318233154dCrossRef Google Scholar PubMed

Molony, S.L., et al., Person-centered assessment and care planning.Gerontologist, 2018. 58(Suppl 1):S32–S47.10.1093/geront/gnx173CrossRef Google Scholar PubMed

Zaharias, G., What is narrative-based medicine? Narrative-based medicine 1. Can Fam Physician, 2018. 64(3):176–180.Google Scholar PubMed

Orsulic-Jeras, S., et al., A dyadic perspective on assessment in Alzheimer’s dementia: supporting both care partners across the disease continuum. Alzheimers Dement (N Y), 2020. 6(1):e12037.10.1002/trc2.12037CrossRef Google Scholar PubMed

Friss Feinberg, L., Moving toward person- and family-centered care. Public Policy Aging Rep, 2014. 24(3):97–101.10.1093/ppar/pru027CrossRef Google Scholar

Dilworth-Anderson, P., Moon, H., Aranda, M.P., Dementia caregiving research: expanding and reframing the lens of diversity, inclusivity, and intersectionality. Gerontologist, 2020. 60(5):797–805.10.1093/geront/gnaa050CrossRef Google Scholar PubMed

Nolan, M., Ingram, P., Watson, R., Working with family carers of people with dementia: “negotiated” coping as an essential outcome. Dementia, 2002. 1(1):75–93.10.1177/147130120200100104CrossRef Google Scholar

Quinn, C., et al., Negotiating the balance: the triadic relationship between spousal caregivers, people with dementia and admiral nurses. Dementia (London), 2013. 12(5):588–605.10.1177/1471301212437780CrossRef Google Scholar PubMed

Fioretti, C., et al., Research studies on patients’ illness experience using the Narrative Medicine approach: a systematic review. BMJ Open, 2016. 6(7):e011220.10.1136/bmjopen-2016-011220CrossRef Google Scholar PubMed

Rosti, G., Role of narrative-based medicine in proper patient assessment. Support Care Cancer, 2017. 25(Suppl 1):3–6.Google Scholar PubMed

Dooley, J., Bailey, C., McCabe, R., Communication in healthcare interactions in dementia: a systematic review of observational studies. Int Psychogeriatr, 2015. 27(8):1277–1300.10.1017/S1041610214002890CrossRef Google Scholar PubMed

Langewitz, W., et al., Spontaneous talking time at start of consultation in outpatient clinic: cohort study. BMJ, 2002. 325(7366):682–683.10.1136/bmj.325.7366.682CrossRef Google Scholar PubMed

Blau, J.N., Time to let the patient speak. BMJ, 1989. 298(6665):39.10.1136/bmj.298.6665.39CrossRef Google Scholar PubMed

Fortin, A.H., Mills, L., Chapter 3: Skill set one: the beginning of the encounter, in Chou, C.L., Cooley, L., eds. Communication Rx: Transforming Healthcare through Relationship-Centered Communication. New York: McGraw-Hill Education, 2018.Google Scholar

Chou, C.M., Chapter 5: Skill set three: delivering diagnoses and treatment plans, in Chou, C.L., Cooley, L., eds. Communication Rx: Transforming Healthcare through Relationship-Centered Communication. New York: McGraw-Hill Education, 2018.Google Scholar

Clark, W.D., Russell, M., Chapter 4: Skill set two: skills that build trust, in Chou, C.L., Cooley, L., eds. Communication Rx: Transforming Healthcare through Relationship-Centered Communication. New York: McGraw-Hill Education, 2018.Google Scholar

Schulz, R.E., Eden, J., eds. Families Caring for an Aging America. Washington, DC: National Academies Press, 2016.10.17226/23606CrossRef Google Scholar

Periyakoil, V.S., Building a culturally competent workforce to care for diverse older adults: scope of the problem and potential solutions. J Am Geriatr Soc, 2019. 67(S2):S423–S432.10.1111/jgs.15939CrossRef Google Scholar PubMed

White, A.A., Stubblefield-Tave, B., Some advice for physicians and other clinicians treating minorities, women, and other patients at risk of receiving health care disparities. J Racial Ethn Health Disparities, 2017. 4(3):472–479.10.1007/s40615-016-0248-6CrossRef Google Scholar PubMed

Apesoa-Varano, E.C., et al., Multi-cultural caregiving and caregiver interventions: a look back and a call for future action. Generations, 2015. 39(4):39–48.Google Scholar

Fredriksen-Goldsen, K.I., et al., Cognitive impairment, Alzheimer’s disease, and other dementias in the lives of lesbian, gay, bisexual and transgender (LGBT) older adults and their caregivers: needs and competencies. J Appl Gerontol, 2018. 37(5):545–569.10.1177/0733464816672047CrossRef Google Scholar PubMed

Hinton, L., et al., Conceptions of dementia in a multiethnic sample of family caregivers. J Am Geriatr Soc, 2005. 53(8):1405–1410.10.1111/j.1532-5415.2005.53409.xCrossRef Google Scholar

Portacolone, E., et al., Expectations and concerns of older adults with cognitive impairment about their relationship with medical providers: a call for therapeutic alliances. Qual Health Res, 2020. 30(10):1584–1595.10.1177/1049732320925796CrossRef Google Scholar

Milby, E., Murphy, G., and Winthrop, A. , Diagnosis disclosure in dementia: understanding the experiences of clinicians and patients who have recently given or received a diagnosis. Dementia (London), 2017. 16(5):611–628.10.1177/1471301215612676CrossRef Google Scholar PubMed

2020 Alzheimer’s disease facts and figures. Alzheimers Dement, 2020 Mar 10.Google Scholar

Increase the proportion of older adults with dementia, or their caregivers, who know they have it – DIA-01. Healthy People 2030 [Healthy People 2030] May 22, 2021. Available from: https://health.gov/healthypeople/objectives-and-data/browse-objectives/dementias/increase-proportion-older-adults-dementia-or-their-caregivers-who-know-they-have-it-dia-01.Google Scholar

Office of the Assistant Secretary for Planning and Evaluation, National Plan to Address Alzheimer’s Disease. Washington, DC: US Department of Health and Human Services, 2012.Google Scholar

Schultz, S.K., et al., Quality improvement in dementia care: Dementia Management Quality Measurement Set 2018 Implementation Update. Neurology, 2020. 94(5):210–216.10.1212/WNL.0000000000008678CrossRef Google Scholar PubMed

Lecouturier, J., et al., Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of “best practice.” BMC Health Serv Res, 2008. 8:95.10.1186/1472-6963-8-95CrossRef Google Scholar PubMed

Grossberg, G.T., et al., The art of sharing the diagnosis and management of Alzheimer’s disease with patients and caregivers: recommendations of an expert consensus panel. Prim Care Companion J Clin Psychiatry, 2010. 12(1):PCC.09cs00833.Google Scholar PubMed

Lichtenstein, B.J., et al., Effect of physician delegation to other healthcare providers on the quality of care for geriatric conditions. J Am Geriatr Soc, 2015. 63(10):2164–2170.10.1111/jgs.13654CrossRef Google Scholar PubMed

Riffin, C., Wolff, J.L., Pillemer, K.A., Assessing and addressing family caregivers’ needs and risks in primary care. J Am Geriatr Soc, 2021. 69(2):432–440.10.1111/jgs.16945CrossRef Google Scholar PubMed

McCabe, M., You, E., Tatangelo, G., Hearing their voice: a systematic review of dementia family caregivers’ needs.Gerontologist, 2016. 56(5):e70–88.10.1093/geront/gnw078CrossRef Google Scholar

Peterson, K., et al., In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers’ education needs, barriers, and preferences. BMC Geriatr, 2016. 16(1):164.10.1186/s12877-016-0338-7CrossRef Google Scholar PubMed

Bilodeau, G., et al., Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes. BMJ Open, 2019. 9(5):e027727.10.1136/bmjopen-2018-027727CrossRef Google Scholar PubMed

Austrom, M.G., Boustani, M., LaMantia, M.A., Ongoing medical management to maximize health and well-being for persons living with dementia. Gerontologist, 2018. 58(Suppl_1):S48–S57.10.1093/geront/gnx147CrossRef Google Scholar PubMed

Gitlin, L.N.P., et al., Translating evidence-based dementia caregiving interventions into practice: state-of-the-science and next steps. Gerontologist, 2015. 55(2):210.10.1093/geront/gnu123CrossRef Google Scholar PubMed

Butler M, G.J., Talley, K.M.C., Abdi, H.I., et al. Care Interventions for People Living with Dementia and Their Caregivers. Rockville, MD: Agency for Healthcare Research and Quality, August 2020.10.23970/AHRQEPCCER231CrossRef Google Scholar

Belle, S.H., et al., Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med, 2006. 145(10):727–738.10.7326/0003-4819-145-10-200611210-00005CrossRef Google Scholar PubMed

Vickrey, B.G., et al., The effect of a disease management intervention on quality and outcomes of dementia care: a randomized, controlled trial. Ann Intern Med, 2006. 145(10):713–726.10.7326/0003-4819-145-10-200611210-00004CrossRef Google Scholar PubMed

Possin, K.L., et al., Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the Care Ecosystem Randomized Clinical Trial. JAMA Intern Med, 2019. 179(12):1658–1667.10.1001/jamainternmed.2019.4101CrossRef Google Scholar PubMed

Gitlin, L.N., et al., Dissemination and implementation of evidence-based dementia care using embedded pragmatic trials. J Am Geriatr Soc, 2020. 68(Suppl 2):S28–S36.10.1111/jgs.16622CrossRef Google Scholar PubMed

Gorges, R.J., Sanghavi, P., Konetzka, R.T., A national examination of long-term care setting, outcomes, and disparities among elderly dual eligibles. Health Aff (Millwood), 2019. 38(7):1110–1118.10.1377/hlthaff.2018.05409CrossRef Google Scholar PubMed

Shih, R.A., et al., Improving dementia long-term care: a policy blueprint. Rand Health Q, 2014. 4(2):2.Google Scholar PubMed

Bernstein Sideman, A., et al., Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives. Alzheimers Dement (N Y), 2021. 7(1):e12144.10.1002/trc2.12144CrossRef Google Scholar PubMed

Mitchell, S.L., et al., The clinical course of advanced dementia. N Engl J Med, 2009. 361(16):1529–1538.10.1056/NEJMoa0902234CrossRef Google Scholar PubMed

Armstrong, M.J., et al., End-of-life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers. PLoS One, 2019. 14(5):e0217039.10.1371/journal.pone.0217039CrossRef Google Scholar PubMed

Mickler, A.K., et al., Understanding the daily experiences and perceptions of homebound older adults and their caregivers: a qualitative study. J Appl Gerontol, 2021:733464821990171.10.1177/0733464821990171CrossRef Google Scholar

Regier, N.G., et al., Place of death for persons with and without cognitive impairment in the United States. J Am Geriatr Soc, 2021. 69(4):924–931.10.1111/jgs.16979CrossRef Google Scholar PubMed

Luth, E.A., et al., Race, ethnicity, and other risks for live discharge among hospice patients with dementia. J Am Geriatr Soc, 2020. 68(3):551–558.10.1111/jgs.16242CrossRef Google Scholar PubMed

Kroenke, K., PHQ-9: global uptake of a depression scale. World Psychiatry, 2021. 20(1):135–136.10.1002/wps.20821CrossRef Google Scholar PubMed

Back, A.L., et al., “Why are we doing this?”: clinician helplessness in the face of suffering. J Palliat Med, 2015. 18(1):26–30.CrossRef Google Scholar PubMed

Bouchard, L., Compassion fatigue in advanced practice registered nurses: why don’t we know more? Nurs Clin North Am, 2019. 54(4):625–637.10.1016/j.cnur.2019.08.002CrossRef Google Scholar PubMed

Pijl-Zieber, E.M., et al., Caring in the wake of the rising tide: Moral distress in residential nursing care of people living with dementia. Dementia (London), 2018. 17(3):315–336.10.1177/1471301216645214CrossRef Google Scholar PubMed

Austin, C.L., Saylor, R., Finley, P.J., Moral distress in physicians and nurses: Impact on professional quality of life and turnover. Psychol Trauma, 2017. 9(4):399–406.10.1037/tra0000201CrossRef Google Scholar PubMed

Back, A.L., Deignan, P.F., Potter, P.A., Compassion, compassion fatigue, and burnout: key insights for oncology professionals. Am Soc Clin Oncol Educ Book, 2014:e454–e459.10.14694/EdBook_AM.2014.34.e454CrossRef Google Scholar

Accessibility standard: WCAG 2.1 AA

Why this information is here

This section outlines the accessibility features of this content - including support for screen readers, full keyboard navigation and high-contrast display options. This may not be relevant for you.

Accessibility Information

The PDF of this book complies with version 2.1 of the Web Content Accessibility Guidelines (WCAG), covering newer accessibility requirements and improved user experiences and achieves the intermediate (AA) level of WCAG compliance, covering a wider range of accessibility requirements.

Content Navigation

Table of contents navigation
Allows you to navigate directly to chapters, sections, or non‐text items through a linked table of contents, reducing the need for extensive scrolling.

Index navigation
Provides an interactive index, letting you go straight to where a term or subject appears in the text without manual searching.

Reading Order & Textual Equivalents

Single logical reading order
You will encounter all content (including footnotes, captions, etc.) in a clear, sequential flow, making it easier to follow with assistive tools like screen readers.

Short alternative textual descriptions
You get concise descriptions (for images, charts, or media clips), ensuring you do not miss crucial information when visual or audio elements are not accessible.

Visual Accessibility

Use of colour is not sole means of conveying information
You will still understand key ideas or prompts without relying solely on colour, which is especially helpful if you have colour vision deficiencies.

Structural and Technical Features

ARIA roles provided
You gain clarity from ARIA (Accessible Rich Internet Applications) roles and attributes, as they help assistive technologies interpret how each part of the content functions.