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Family Caregiving of Persons With Dementia: Prevalence, Health Effects, and Support Strategies
Abstract
The authors summarize the dementia caregiving literature and provide recommendations regarding practice guidelines for health professionals working with caregivers. Family caregiving of older persons with disability has become commonplace in the United States because of increases in life expectancy and the aging of the population, with resulting higher prevalence of chronic diseases and associated disabilities, increased constraints in healthcare reimbursement, and advances in medical technology. As a result, family members are increasingly being asked to perform complex tasks similar to those carried out by paid health or social service providers, often at great cost to their own well-being and great benefit to their relatives and society as a whole. The public health significance of caregiving has spawned an extensive literature in this area, much of it focused on dementia caregiving because of the unique and extreme challenges associated with caring for someone with cognitive impairment. This article summarizes the literature on dementia caregiving, identifies key issues and major findings regarding the definition and prevalence of caregiving, describes the psychiatric and physical health effects of caregiving, and reviews various intervention approaches to improving caregiver burden, depression, and quality of life. Authors review practice guidelines and recommendations for healthcare providers in light of the empirical literature on family caregiving.
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Greater perceived stress is associated with negative emotional, physiological, and behavioral responses that increase the individual's risk for psychological and physical conditions (e.g., depression, cardiovascular disease, pain).
“Greater perceived stress is associated with negative emotional, physiological, and behavioral responses that increase the individual's risk for psychological and physical conditions (e.g., depression, cardiovascular disease, pain) [9], [10], [25], [26].”
From A novel two-day intervention reduces stress in caregivers of persons with dementia (2018) · cites this paper as [25]
Caring for a person with dementia is associated with higher levels of distress, illness and decreased quality of life.
“Caring for a PwD is associated with higher levels of distress, illness and a decreased quality of life (Schulz and Martire, 2004).”
From Mindfulness-Based Intervention for People With Dementia and Their Partners: Results of a Mixed-Methods Study. (2019) · cites this paper as Schulz and Martire, 2004
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Dowling, G. A., Merrilees, J., Mastick, J., Chang, V. Y., Hubbard, E., & Moskowitz, J. T. (2014) · Alzheimer Disease & Associated Disorders · doi:10.1097/wad.0b013e3182a6b905 · Cited by 69
Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?
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A pilot investigation of mindfulness-based stress reduction for caregivers of frail elderly.
Epstein-Lubow, G., McBee, L., Darling, E., Armey, M., & Miller, I. W. (2011) · Mindfulness · doi:10.1007/s12671-011-0047-4 · Cited by 65
Experiential Avoidance, Acceptance, and Depression in Dementia Family Caregivers
Spira, A. P., Beaudreau, S. A., Jimenez, D., Kierod, K., Cusing, M. M., Gray, H. L., & Gallagher-Thompson, D. (2007) · Clinical Gerontologist · doi:10.1300/j018v30n04_04 · Cited by 64
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Depression among caregivers of patients with dementia
Alfakhri, A. S., Alshudukhi, A. W., Alqahtani, A. A., Alhumaid, A. M., Alhathlol, O. A., Almojali, A. I., Alotaibi, M. A., & Alaqeel, M. K. (2018) · INQUIRY The Journal of Health Care Organization Provision and Financing · doi:10.1177/0046958017750432 · Cited by 63
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Guidelines for the treatment of Alzheimer’s disease from the Italian Association of Psychogeriatrics
Caltagirone, C., Bianchetti, A., Luca, M. D., Mecocci, P., Padovani, A., Pirfo, E., Scapicchio, P., Senin, U., Trabucchi, M., & Musicco, M. (2005) · Drugs & Aging · doi:10.2165/00002512-200522001-00002 · Cited by 55
von Känel, R., Mausbach, B. T., Dimsdale, J. E., Mills, P. J., Patterson, T. L., Ancoli-Israel, S., Ziegler, M. G., Roepke, S. K., Chattillion, E. A., Allison, M., et al. (2012) · Psychosomatic Medicine · doi:10.1097/psy.0b013e3182408c14 · Cited by 49
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“Caring for a PwD is associated with higher levels of distress, illness and a decreased quality of life (Schulz and Martire, 2004).”
BackgroundHwang, A., Truong, K., & Mihailidis, A. (2012) · Proceedings of the 6th International Conference on Pervasive Computing Technologies for Healthcare · doi:10.4108/icst.pervasivehealth.2012.248671 · Cited by 43
Fowler, N. R., Judge, K. S., Lucas, K., Gowan, T., Stutz, P., Shan, M., Wilhelm, L., Parry, T., & Johns, S. A. (2021) · BMC Geriatrics · doi:10.1186/s12877-021-02078-0 · Cited by 39
“with Alzheimer’s disease or a related dementia (ADRD) [1], 75% are cared for by family caregivers [2].”
BackgroundFeasibility of Central Meditation and Imagery Therapy for dementia caregivers
Jain, F. A., Nazarian, N., & Lavretsky, H. (2014) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.4076 · Cited by 38
Religious coping in caregivers of family members with dementia
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“I Am the Home Care Agency”: The Dementia Family Caregiver Experience Managing Paid Care in the Home
Reckrey, J. M., Watman, D., Tsui, E. K., Franzosa, E., Perez, S., Fabius, C. D., & Ornstein, K. A. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph19031311 · Cited by 32
Improving the Mental Health of Older Adults
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The Effect of Physical and Cognitive Impairments on Caregiving
Jutkowitz, E., Gozalo, P., Trivedi, A., Mitchell, L., & Gaugler, J. E. (2020) · Medical Care · doi:10.1097/mlr.0000000000001323 · Cited by 25
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A novel two-day intervention reduces stress in caregivers of persons with dementia
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“, depression, cardiovascular disease, pain) [9,10,25,26].”
Romero-Moreno, R., Márquez-González, M., Barrera-Caballero, S., Vara-García, C., Olazarán, J., Pedroso-Chaparro, M. D. S., Jiménez-Gonzalo, L., & Losada-Baltar, A. (2021) · Journal of Alzheimer's Disease · doi:10.3233/jad-210348 · Cited by 5
Ozen, L. J., Dubois, S., English, M. M., Gibbons, C., Maxwell, H., Lowey, J., Sawula, E., & Bédard, M. (2022) · Alzheimer's & Dementia: Translational Research & Clinical Interventions · doi:10.1002/trc2.12252 · Cited by 4
Khalaila, R. (2022) · Research in Gerontological Nursing · doi:10.3928/19404921-20220930-02 · Cited by 5
Hockemeyer, N. G., Johns, S. A., Judge, K. S., Baucco, C., Gowan, T., Slaven, J. E., & Fowler, N. R. (2025) · Aging & Mental Health · doi:10.1080/13607863.2025.2453823 · Cited by 4
“Among the 6.9 million individuals in the U.S. living with ADRD, 83% are cared for by nonpaid family caregivers (Schulz & Martire, 2004).”
Influentialvan der Heide, I., Heins, M. J., van Hout, H. P. J., Verheij, R. A., Francke, A. L., & Joling, K. J. (2021) · The Journals of Gerontology Series B · doi:10.1093/geronb/gbaa204 · Cited by 4
Biernetzky, O. A., Thyrian, J. R., Boekholt, M., Berndt, M., Hoffmann, W., Teipel, S. J., & Kilimann, I. (2025) · JMIR Aging · doi:10.2196/59942 · Cited by 4
Psycho-educatie bij hersenletsel
Lafosse, C. (2016) · Neuropraxis · doi:10.1007/s12474-016-0134-3 · Cited by 2
Zhou, X., Zou, N., Shi, C., Chen, S., & Shi, J. (2026) · Aging & Mental Health · doi:10.1080/13607863.2025.2573071 · Cited by 1
Metadata
- Authors
- Schulz, R., & Martire, L. M.
- Affiliations
- University of Pittsburgh (US)
- Corresponding author
- Schulz, Richard
- Venue
- The American Journal of Geriatric Psychiatry
- Publisher
- Elsevier BV
- Published
- 2004-05
- Volume
- 12
- Issue
- 3
- Pages
- 240-249
- ISSN
- 1064-7481 (ISSN-L)
- OpenAlex
- W2056830272
- Cited by
- 1,189
- References
- 55
- Citations by year
- 2026: 35 · 2025: 50 · 2024: 41 · 2023: 57 · 2022: 58 · 2021: 68 · 2020: 69 · 2019: 73 · 2018: 72 · 2017: 70 · 2016: 56 · 2015: 93 · 2014: 93 · 2013: 62 · 2012: 57
- FWCI
- 14.93
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- American Journal of Geriatric Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institute on Aging (R01AG015321)
- National Heart, Lung, and Blood Institute (P50HL065112, P50HL065111)
- National Institute of Mental Health (P30MH052247, U01-MH46015, K01MH065547)
- National Institute of Nursing Research (R01NR008272)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- family caregiving, dementia, caregiver burden, caregiver depression, quality of life, caregiver support interventions, older adults with disabilities, population aging
- MeSH terms
- Aged, Mental Disorders, Dementia, Depression, Health Personnel, Health Services for the Aged, Health Status, Humans, Public Health, Quality of Life, Social Support, Caregivers, Cost of Illness, Guidelines as Topic
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