Resources for Caregivers & Caregiving

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Resources for Caregiving:

25 Books, 70 Recent Articles, & 56 Websites

I gathered together on this page to help both caregivers and the clinicians who work with them to find information, support, and other resources.

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I've organized the caregiving resources into 3 categories:

a) books,

b) articles and chapters, &

c) web sites.

Currently there are 25 books (published 2010-2016), 70 recent articles (published in 2016), and 56 web sites. However, I will update the site several times a year.

PLEASE NOTE: This web site includes 10 other pages of related sets of resources:

25 Books (2010-2016):

Bernhard, T. (2010). How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Somerville, MA: Wisdom Publications.
Bruhn, J. G. (2016). After diagnosis: Family caregiving with hospice patients. New York: Springer.
Burgio, L. D., Gaugler, J. E., & Hilgeman, M. M. (Eds.). (2016). The spectrum of family caregiving for adults and elders with chronic illness. New York: Oxford University Press.
Denholm, D. D. (2012). The Caregiving Wife's Handbook: Compassionate Strategies, Stories of Success. Hunter House.
Gaugler, J. E., & Kane, R. L. (Eds.). (2015). Family caregiving in the new normal. San Diego, CA: Elsevier Academic Press.
Greenberg, T. M. (2012). When Someone You Love Has a Chronic Illness: Hope and Help for Those Providing Support. Cedar Fort, Inc.
Hayslip, B., Jr., & Smith, G. C. (Eds.). (2013). Resilient grandparent caregivers: A strengths-based perspective. New York: Routledge/Taylor & Francis Group.
Kane, R., & Quellette, J. (2011). The good caregiver: A one-of-a-kind compassionate resource for anyone caring for an aging loved one. New York, NY: Avery/Penguin Group.
Keene, N. (2010). Childhood Leukemia: A guide for Families, Friends & Caregivers, 4th Edition. Sebastopol, CA: Patient Centered Guides.
LeBlanc, G. J. (2011). Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving Expanded Edition. Xlibris Corporation.
Lipton, A. M., & Marshall, C. D. (2013). The common sense guide to dementia for clinicians and caregivers. NY: Springer Science.
Martin, W., & Martin, N. (2011). The Caregiver's Tao Te Ching: Compassionate Caring for Your Loved Ones and Yourself. Novato, CA: New World Library.
McQuellon, R. P., & Cowan, M. A. (2010). The art of conversation through serious illness: Lessons for caregivers. New York, NY, US: Oxford University Press.
Mills, H. L., & Casciani,J. M. (2010). Caregiving Tips for Families Managing Dementia. Kindle e-book.
Nouwen, H. (2011). A Spirituality of Caregiving. Upper Room.
Percy, K. W. (2010). Working with aging families: Therapeutic solutions for caregivers, spouses, & adult children. New York, NY, US: W W Norton & Co.
Qualls, S. H., & Williams, A. A. (2013). Caregiver family therapy: Empowering families to meet the challenges of aging. Washington, DC: American Psychological Association.
Santulli, R. B. (2011). The Alzheimer's family: Helping caregivers cope. New York: W W Norton & Co.
Sheehy, G. (2011). Passages in Caregiving: Turning Chaos into Confidence. New York: William Morrow.
Talley, R. C., & Crews, J. E. (Eds.). (2012). Multiple dimensions of caregiving and disability: Research, practice, policy. NY: Springer Science.
Talley, R. C., McCorkle, R., & Baile, W. F. (Eds.). (2012). Cancer caregiving in the United States: Research, practice, policy. New York, NY: Springer Science
Talley, R. C., & Montgomery, R. J. V. (Eds.). (2013). Caregiving across the lifespan: Research, practice, policy. NY: Springer Science.
Toseland, R. W., Haigler, D. H., & Monohan, D. J. (Eds.). (2011). Education and Support Programs for Caregivers: Research, Practice, Policy. New York: Springer.
Zarit, S. H., & Talley, R. C. (Eds.). (2013). Caregiving for Alzheimer's disease and related disorders: Research, practice, policy. NY: Springer Science.

70 Recent Articles (published in 2016):

Acri, M., Hooley, C. D., Richardson, N., & Moaba, L. B. (2016). Peer models in mental health for caregivers and families. Community Mental Health Journal, published online in advance of print publication.

Ali, S., & Bokharey, I. Z. (2016). Caregiving in dementia: Emotional and behavioral challenges. Educational Gerontology, 42(7), 455-464. doi: 10.1080/03601277.2016.1156375

Alves, S., Teixeira, L., Azevedo, M. J., Duarte, M., & Paúl, C. (2016). Effectiveness of a psychoeducational programme for informal caregivers of older adults. Scandinavian Journal of Caring Sciences, 30(1), 65-73. doi: 10.1111/scs.12222

Anum, J., & Dasti, R. (2016). Caregiver burden, spirituality, and psychological well-being of parents having children with Thalassemia. Journal of Religion and Health, 55(3), 941-955. doi: 10.1007/s10943-015-0127-1

Avieli, H., Ben-David, S., & Levy, I. (2016). Predicting professional quality of life among professional and volunteer caregivers. Psychological Trauma: Theory, Research, Practice, and Policy, 8(1), 80-87. doi: 10.1037/tra0000066

Bademli, K., & Duman, Z. Ç. (2016). Emotions, ideas and experiences of caregivers of patients with schizophrenia about "family to family support program". Archives of Psychiatric Nursing, 30(3), 329-333. doi: 10.1016/j.apnu.2015.12.002

Bekhet, A. K., & Matel-Anderson, D. (2016). Risk and protective factors in the lives of caregivers of persons with autism: Caregivers' perspectives. Perspectives in Psychiatric Care, published online in advance of print publication.

Berkout, O. V., & Kolko, D. J. (2016). Understanding child directed caregiver aggression: An examination of characteristics and predictors associated with perpetration. Child Abuse & Neglect, 56, 44-53. doi: 10.1016/j.chiabu.2016.04.004

Bobbitt, S. A., Baugh, L. A., Andrew, G. H., Cook, J. L., Green, C. R., Pei, J. R., et al. (2016). Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder. Research in Developmental Disabilities, 55, 100-113. doi: 10.1016/j.ridd.2016.03.002

Branger, C., Burton, R., O'Connell, M. E., Stewart, N., & Morgan, D. (2016). Coping with cognitive impairment and dementia: Rural caregivers' perspectives. Dementia: The International Journal of Social Research and Practice, 15(4), 814-831. doi: 10.1177/1471301214539956

Bull, M. J., Boaz, L., & Jermé, M. (2016). educating family caregivers for older adults about delirium: A systematic review. Worldviews on Evidence-Based Nursing, 13(3), 232-240. doi: 10.1111/wvn.12154

Caceres, B. A., Frank, M. O., Jun, J., Martelly, M. T., Sadarangani, T., & de Sales, P. C. (2016). Family caregivers of patients with frontotemporal dementia: An integrative review. International Journal of Nursing Studies, 55, 71-84. doi: 10.1016/j.ijnurstu.2015.10.016

Cameron, J. I., Chu, L. M., Matte, A., Tomlinson, G., Chan, L., Thomas, C., et al. (2016). One-year outcomes in caregivers of critically ill patients. The New England Journal of Medicine, 374(19), 1831-1841. doi: 10.1056/NEJMoa1511160

Capistrant, B. D., Torres, B., Merengwa, E., West, W. G., Mitteldorf, D., & Rosser, B. R. S. (2016). Caregiving and social support for gay and bisexual men with prostate cancer. Psycho-Oncology, published online in advance of print publication.

Caputo, J., Pavalko, E. K., & Hardy, M. A. (2016). The long-term effects of caregiving on women's health and mortality. Journal of Marriage and Family, published online in advance of print publication.

Carletto, S., Borghi, M., Francone, D., Scavelli, F., Bertino, G., Cavallo, M., et al. (2016). The efficacy of a Mindfulness Based Intervention for depressive symptoms in patients with Multiple Sclerosis and their caregivers: Study protocol for a randomized controlled clinical trial. BMC Neurology, 16. doi: 10.1186/s12883-016-0528-0

Carr, T., Shih, W., Lawton, K., Lord, C., King, B., & Kasari, C. (2016). The relationship between treatment attendance, adherence, and outcome in a caregiver-mediated intervention for low-resourced families of young children with autism spectrum disorder. Autism, 20(6), 643-652. doi: 10.1177/1362361315598634

Chang, S., Zhang, Y., Jeyagurunathan, A., Lau, Y. W., Sagayadevan, V., Chong, S. A., et al. (2016). Providing care to relatives with mental illness: Reactions and distress among primary informal caregivers. BMC Psychiatry, 16.

Chen, X., Mao, Y., Kong, L., Li, G., Xin, M., Lou, F., et al. (2016). Resilience moderates the association between stigma and psychological distress among family caregivers of patients with schizophrenia. Personality and Individual Differences, 96, 78-82. doi: 10.1016/j.paid.2016.02.062

Cipolletta, S., Pasi, M., & Avesani, R. (2016). Vita tua, mors mea: The experience of family caregivers of patients in a vegetative state. Journal of Health Psychology, 21(7), 1197-1206. doi: 10.1177/1359105314550348

Clarke, P. B., Adams, J. K., Wilkerson, J. R., & Shaw, E. G. (2016). Wellness-based counseling for caregivers of persons with dementia. Journal of Mental Health Counseling, 38(3), 263-277. doi: 10.17744/mehc.38.3.06

Coelho, A. M., Delalibera, M. A., & Barbosa, A. (2016). Palliative care caregivers' grief mediators: A prospective study. American Journal of Hospice & Palliative Medicine, 33(4), 346-353. doi: 10.1177/1049909114565660

Crespo, C., Santos, S., Tavares, A., & Salvador, Á. (2016). "Care that matters": Family-centered care, caregiving burden, and adaptation in parents of children with cancer. Families, Systems, & Health, 34(1), 31-40. doi: 10.1037/fsh0000166

Dam, A. E. H., de Vugt, M. E., Klinkenberg, I. P. M., Verhey, F. R. J., & van Boxtel, M. P. J. (2016). A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise? Maturitas, 85, 117-130. doi: 10.1016/j.maturitas.2015.12.008

Edmond, S. N., Graves, P. E., Whiting, S. E., & Karlson, C. W. (2016). Emotional distress and burden among caregivers of children with oncological/hematological disorders. Families, Systems, & Health, 34(2), 166-171. doi: 10.1037/fsh0000181

Feast, A., Moniz-Cook, E., Stoner, C., Charlesworth, G., & Orrell, M. (2016). A systematic review of the relationship between behavioral and psychological symptoms (bpsd) and caregiver well-being. International Psychogeriatrics, published online in advance of print publication.

Gallego-Alberto, L., Losada, A., Márquez-González, M., Romero-Moreno, R., & Vara, C. (2016). Commitment to personal values and guilt feelings in dementia caregivers. International Psychogeriatrics, published online in advance of print publication.

Gitlin, L. N., & Rose, K. (2016). Impact of caregiver readiness on outcomes of a nonpharmacological intervention to address behavioral symptoms in persons with dementia. International Journal of Geriatric Psychiatry, 31(9), 1056-1063. doi: 10.1002/gps.4422

Greene, J., Cohen, D., Siskowski, C., & Toyinbo, P. (2016). The relationship between family caregiving and the mental health of emerging young adult caregivers. The Journal of Behavioral Health Services & Research, published online in advance of print publication.

Guerriere, D., Husain, A., Zagorski, B., Marshall, D., Seow, H., Brazil, K., et al. (2016). Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada. Health & Social Care in the Community, 24(4), 428-438. doi: 10.1111/hsc.12219

Häusler, A., Sánchez, A., Gellert, P., Deeken, F., Rapp, M. A., & Nordheim, J. (2016). Perceived stress and quality of life in dementia patients and their caregiving spouses: Does dyadic coping matter? International Psychogeriatrics, published online in advance of print publication.

Hodapp, R. M., Burke, M. M., Finley, C. I., & Urbano, R. C. (2016). Family caregiving of aging adults with Down syndrome. Journal of Policy and Practice in Intellectual Disabilities, 13(2), 181-189. doi: 10.1111/jppi.12153

Hubbard, A. A., McEvoy, P. M., Smith, L., & Kane, R. T. (2016). Brief group psychoeducation for caregivers of individuals with bipolar disorder: A randomized controlled trial. Journal of Affective Disorders, 200, 31-36. doi: 10.1016/j.jad.2016.04.013

Iecovich, E. (2016). Do caregiving burden and satisfaction predict loneliness in older care recipients? Aging & Mental Health, 20(4), 441-449. doi: 10.1080/13607863.2015.1020413

Khalaila, R., & Cohen, M. (2016). Emotional suppression, caregiving burden, mastery, coping strategies and mental health in spousal caregivers. Aging & Mental Health, 20(9), 908-917. doi: 10.1080/13607863.2015.1055551

Kingston, C., Onwumere, J., Keen, N., Ruffell, T., & Kuipers, E. (2016). Posttraumatic stress symptoms (PTSS) in caregivers of people with psychosis and associations with caregiving experiences. Journal of Trauma & Dissociation, 17(3), 307-321. doi: 10.1080/15299732.2015.1089969

Koenig, H. G., Nelson, B., Shaw, S. F., Saxena, S., & Cohen, H. J. (2016). Religious involvement and telomere length in women family caregivers. Journal of Nervous and Mental Disease, 204(1), 36-42. doi: 10.1097/NMD.0000000000000443

Koyama, A., Matsushita, M., Hashimoto, M., Fujise, N., Ishikawa, T., Tanaka, H., et al. (2016). Mental health among younger and older caregivers of dementia patients. Psychogeriatrics, published online in advance of print publication.

Krieger, T., Feron, F., & Dorant, E. (2016). Developing a complex intervention programme for informal caregivers of stroke survivors: The caregivers' guide. Scandinavian Journal of Caring Sciences, published online in advance of print publication.

Kurz, A., Bakker, C., Böhm, M., Diehl-Schmid, J., Dubois, B., Ferreira, C., et al. (2016). Rhapsody – internet-based support for caregivers of people with young onset dementia: Program design and methods of a pilot study. International Psychogeriatrics, published online in advance of print publication.

Lagasse, L. L., Conradt, E., Karalunas, S. L., Dansereau, L. M., Butner, J. E., Shankaran, S., et al. (2016). Transactional relations between caregiving stress, executive functioning, and problem behavior from early childhood to early adolescence. Development and Psychopathology, 28(3), 743-756. doi: 10.1017/S0954579416000286

Lambert, S. D., Duncan, L. R., Kapellas, S., Bruson, A.-M., Myrand, M., Santa Mina, D., et al. (2016). A descriptive systematic review of physical activity interventions for caregivers: Effects on caregivers' and care recipients' psychosocial outcomes, physical activity levels, and physical health. Annals of Behavioral Medicine, published online in advance of print publication.

Li, G., Yuan, H., & Zhang, W. (2016). The effects of mindfulness-based stress reduction for family caregivers: Systematic review. Archives of Psychiatric Nursing, 30(2), 292-299. doi: 10.1016/j.apnu.2015.08.014

Liljeroos, M., Ågren, S., Jaarsma, T., Årestedt, K., & Strömberg, A. (2016). Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: A randomized controlled trial. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, published online in advance of print publication.

Lozano, Y. M., Martinez-Ramos, G. P., & Pilotti, M. (2016). Assessing caregivers' needs in the workplace: A pilot study. Educational Gerontology, 42(7), 465-473. doi: 10.1080/03601277.2016.1156378

McCarthy, M. J., Smith, R. R., Schellinger, J., Behimer, G., Hargraves, D., Sutter, J., et al. (2016). Impact of youth strengths and objective strain on the experiences of subjective strain among caregivers of youth with behavioral health conditions. Journal of Child and Family Studies, published online in advance of print publication.

Meichsner, F., Schinköthe, D., & Wilz, G. (2016). Managing loss and change: Grief interventions for dementia caregivers in a CBT-based trial. American Journal of Alzheimer's Disease and Other Dementias, 31(3), 231-240. doi: 10.1177/1533317515602085

Moye, J. (2016). Assessing older adults, their caregivers, and their environments. Clinical Gerontologist: The Journal of Aging and Mental Health, 39(4), 261-262. doi: 10.1080/07317115.2016.1174498

Navarta-Sánchez, M. V., Senosiain García, J. M., Riverol, M., Ursúa Sesma, M. E., Díaz de Cerio Ayesa, S., Anaut Bravo, S., et al. (2016). Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 25(8), 1959-1968. doi: 10.1007/s11136-015-1220-3

Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., & Guldin, M.-B. (2016). Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clinical Psychology Review, 44, 75-93. doi: 10.1016/j.cpr.2016.01.002

Onozawa, R., Tsugawa, J., Tsuboi, Y., Fukae, J., Mishima, T., & Fujioka, S. (2016). The impact of early morning off in Parkinson's disease on patient quality of life and caregiver burden. Journal of the Neurological Sciences, 364, 1-5. doi: 10.1016/j.jns.2016.02.066

Pagnini, F., Phillips, D., Bosma, C. M., Reece, A., & Langer, E. (2016). Mindfulness as a protective factor for the burden of caregivers of amyotrophic lateral sclerosis patients. Journal of Clinical Psychology, 72(1), 101-111. doi: 10.1002/jclp.22235

Perlick, D. A., Berk, L., Kaczynski, R., Gonzalez, J., Link, B., Dixon, L., et al. (2016). Caregiver burden as a predictor of depression among family and friends who provide care for persons with bipolar disorder. Bipolar Disorders, published online in advance of print publication.

Powell, J. M., Fraser, R., Brockway, J. A., Temkin, N., & Bell, K. R. (2016). A telehealth approach to caregiver self-management following traumatic brain injury: A randomized controlled trial. The Journal of Head Trauma Rehabilitation, 31(3), 180-190. doi: 10.1097/HTR.0000000000000167

Qualls, S. H. (2016). Caregiving families within the long-term services and support system for older adults. American Psychologist, 71(4), 283-293. doi: 10.1037/a0040252

Reblin, M., Donaldson, G., Ellington, L., Mooney, K., Caserta, M., & Lund, D. (2016). Spouse cancer caregivers' burden and distress at entry to home hospice: The role of relationship quality. Journal of Social and Personal Relationships, 33(5), 666-686. doi: 10.1177/0265407515588220

Romero-Moreno, R., Losada, A., Márquez-González, M., & Mausbach, B. T. (2016). Stressors and anxiety in dementia caregiving: Multiple mediation analysis of rumination, experiential avoidance, and leisure. International Psychogeriatrics, published online in advance of print publication.

Rumpold, T., Schur, S., Amering, M., Ebert-Vogel, A., Kirchheiner, K., Masel, E., et al. (2016). Hope as determinant for psychiatric morbidity in family caregivers of advanced cancer patients. Psycho-Oncology, published online in advance of print publication.

Sagut, P., & Çetinkaya Duman, Z. (2016). Comparison of caregiver burden in first episode versus chronic psychosis. Archives of Psychiatric Nursing, published online in advance of print publication.

Samson, Z. B., Parker, M., Dye, C., & Hepburn, K. (2016). Experiences and learning needs of African American family dementia caregivers. American Journal of Alzheimer's Disease and Other Dementias, 31(6), 492-501. doi: 10.1177/1533317516628518

Sanders, A. E. (2016). Caregiver stress and the patient with dementia. CONTINUUM: Lifelong Learning in Neurology, 22(2), 619-625.

Schmidt, A. E., Ilinca, S., Schulmann, K., Rodrigues, R., Principi, A., Barbabella, F., et al. (2016). Fit for caring: Factors associated with informal care provision by older caregivers with and without multimorbidity. European Journal of Ageing, 13(2), 103-113. doi: 10.1007/s10433-016-0373-4

Smith-Osborne, A., & Felderhoff, B. (2016). Formal and family caregiver protective factors in systems of care: A systematic review with implications toward a resilience model for aging veterans. Traumatology, 22(1), 29-39. doi: 10.1037/trm0000056

Soylu, C., Ozaslan, E., Karaca, H., & Ozkan, M. (2016). Psychological distress and loneliness in caregiver of advanced oncological inpatients. Journal of Health Psychology, 21(9), 1896-1906. doi: 10.1177/1359105314567770

Stoner, J. B., & Stoner, C. R. (2016). Career disruption: The impact of transitioning from a full-time career professional to the primary caregiver of a child with autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 31(2), 104-114. doi: 10.1177/1088357614528798

Suzuki, K., Tamakoshi, K., & Sakakibara, H. (2016). Caregiving activities closely associated with the development of low-back pain among female family caregivers. Journal of Clinical Nursing, 25(15-16), 2156-2167. doi: 10.1111/jocn.13167

Svendsboe, E., Terum, T., Testad, I., Aarsland, D., Ulstein, I., Corbett, A., et al. (2016). Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease. International Journal of Geriatric Psychiatry, 31(9), 1075-1083. doi: 10.1002/gps.4433

Thai, J. N., Barnhart, C. E., Cagle, J., & Smith, A. K. (2016). "It just consumes your life": Quality of life for informal caregivers of diverse older adults with late-life disability. American Journal of Hospice & Palliative Medicine, 33(7), 644-650. doi: 10.1177/1049909115583044

Walker, R. V., Powers, S. M., & Bisconti, T. L. (2016). Positive aspects of the caregiving experience: Finding hope in the midst of the storm. Women & Therapy, 39(3-4), 354-370. doi: 10.1080/02703149.2016.1116868

Yu, H., Wu, L., Chen, S., Wu, Q., Yang, Y., & Edwards, H. (2016). Caregiving burden and gain among adult-child caregivers caring for parents with dementia in china: The partial mediating role of reciprocal filial piety. International Psychogeriatrics, published online in advance of print publication.

56 Websites:

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Caregiver Resources

Resources for Caregiving: 25 Books, 70 Recent Articles, & 56 Websites

25 Books (2010-2016):

70 Recent Articles (published in 2016):

56 Websites:

Resources for Caregiving:

25 Books, 70 Recent Articles, & 56 Websites