Caregiver Resources

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Resources for Caregiving:

42 Books, 54 Recent Articles, & 55 Websites

Kenneth S. Pope, Ph.D., ABPP

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

This site is fully accessible for people with disabilities; please follow this link to change text size, color, or contrast; please follow this link for other accessibility functions for those with visual, mobility, and other disabilities.

I've organized the caregiving resources into 3 categories:

a) books,

b) articles and chapters, &

c) web sites.

Currently there are 42 books (published 2010-2019), 55 recent articles (published in 2019), and 55 web sites. However, I will update the site several times a year.

PLEASE NOTE: This web site includes other related sets of resources, including:

42 Books (2010-2019):

54 Recent Articles (published in 2019):

Aerts, Hannelore, Van Vrekhem, Tineke, Stas, Lara, & Marinazzo, Daniele. (2019). The interplay between emotion regulation, emotional well-being, and cognitive functioning in brain tumor patients and their caregivers: An exploratory study. Psycho-Oncology, No Pagination Specified-No Pagination Specified. Allen, Jessica Y., Haley, William E., & Small, Brent J. (2019). Bereavement outcomes among spousal hospice caregivers: Relief, rumination, and perceived patient suffering. Death Studies, No Pagination Specified

Aloweni, Fazila, Doshi, Kinjal, Fook-Chong, Stephanie, Malhotra, Rahul, & Østbye, Truls. (2019). The types of caregiving reactions experienced by the older spouse caregivers. Journal of Clinical Nursing, No Pagination Specified-No Pagination Specified. doi:10.1111/jocn.15044

Barnhart, Wesley R., Ellsworth, David W., Robinson, Ann C., Myers, John V., Andridge, Rebecca R., & Havercamp, Susan M. (2019). Caregiving in the shadows: National analysis of health outcomes and intensity and duration of care among those who care for people with mental illness and for people with developmental disabilities. Disability and Health Journal, No Pagination Specified-No Pagination Specified. doi:10.1016/j.dhjo.2019.100837

Bassi, Marta, Cilia, Sabina, Falautano, Monica, Grobberio, Monica, Negri, Luca, Niccolai, Claudia, . . . Delle Fave, Antonella. (2019). The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well-being. Health & Social Care in the Community, No Pagination Specified-No Pagination Specified. doi:10.1111/hsc.12858

Brickell, Tracey A., French, Louis M., Gartner, Rachel L., Driscoll, Angela E., Wright, Megan M., Lippa, Sara M., & Lange, Rael T. (2019). Factors related to perceived burden among caregivers of service members/veterans following TBI. Rehabilitation Psychology, 64(3), 307-319. doi:10.1037/rep0000272

Carlozzi, Noelle E., Kallen, Michael A., Brickell, Tracey A., Lange, Rael T., Boileau, Nicholas R., Tulsky, David, . . . Sander, Angelle M. (2019). Measuring emotional suppression in caregivers of adults with traumatic brain injury. Rehabilitation Psychology, No Pagination Specified-No Pagination Specified. doi:10.1037/rep0000291

Carmassi, C., Corsi, M., Bertelloni, C. A., Pedrinelli, V., Massimetti, G., Peroni, D. G., . . . Dell'Osso, L. (2019). Post-traumatic stress and major depressive disorders in parent caregivers of children with a chronic disorder. Psychiatry Research, 279, 195-200. doi:10.1016/j.psychres.2019.02.062

Carney, Tara, Chimbambo, Vimbayinashe, Johnson, Kim, Louw, Johann, & Myers, Bronwyn. (2019). The adaptation of an evidence-based brief intervention for substance-using adolescents and their caregivers. Psychotherapy Research, No Pagination Specified-No Pagination Specified. doi:10.1080/10503307.2019.1656352

Carpenter, Erica N. (2019). The relationship between intimate partner relationship quality and health outcomes for filial caregivers. Journal of Couple & Relationship Therapy, No Pagination Specified-No Pagination Specified. doi:10.1080/15332691.2019.1642818

Chen, Cory K., Nehrig, Nicole, Abraham, Karen S., Wang, Binhuan, Palfrey, Amy P., & Baer, Alyssa L. (2019). Predictors of symptoms remission among family caregivers of individuals with dementia receiving REACH VA. American Journal of Alzheimer's Disease and Other Dementias, 34(6), 376-380. doi:10.1177/1533317519826241

Chen, Qi, Terhorst, Lauren, Lowery-Allison, Amy, Cheng, Hannah, Tsung, Allan, Layshock, Mikhaila, . . . Steel, Jennifer L. (2019). Sleep problems in advanced cancer patients and their caregivers: Who is disturbing whom? Journal of Behavioral Medicine, No Pagination Specified-No Pagination Specified. doi:10.1007/s10865-019-00088-3

Cheng, Sheung-Tak, Chan, Wai Chi, & Lam, Linda C. W. (2019). Long-term outcomes of the benefit-finding group intervention for Alzheimer family caregivers: A cluster-randomized double-blind controlled trial. The American Journal of Geriatric Psychiatry, 27(9), 984-994. doi:10.1016/j.jagp.2019.03.013

Cohen, Steven A., Sabik, Natalie J., Cook, Sarah K., Azzoli, Ariana B., & Mendez-Luck, Carolyn A. (2019). Differences within differences: Gender inequalities in caregiving intensity vary by race and ethnicity in informal caregivers. Journal of Cross-Cultural Gerontology, No Pagination Specified-No Pagination Specified. doi:10.1007/s10823-019-09381-9

Dillinger, Rachel L., & Kersun, Jonathan M. (2019). Caring for caregivers: Understanding and meeting their needs in coping with first episode psychosis. Early Intervention in Psychiatry, No Pagination Specified-No Pagination Specified. doi:10.1111/eip.12870

Factor, Reina S., Ollendick, Thomas H., Cooper, Lee D., Dunsmore, Julie C., Rea, Hannah M., & Scarpa, Angela. (2019). All in the family: A systematic review of the effect of caregiver-administered autism spectrum disorder interventions on family functioning and relationships. Clinical Child and Family Psychology Review, No Pagination Specified-No Pagination Specified. doi:10.1007/s10567-019-00297-x

Fallucco, Elise M., Greco, Peggy, Aldridge, Petra, & Robertson Blackmore, Emma. (2019). Caregiver depressive symptoms associated with behavioral and emotional problems in preschoolers. Journal of Child and Family Studies, No Pagination Specified-No Pagination Specified. doi:10.1007/s10826-019-01573-8

García-Castro, F. Javier, Alba, Ana, & Blanca, María J. (2019). The role of character strengths in predicting gains in informal caregivers of dementia. Aging & Mental Health, No Pagination Specified-No Pagination Specified. doi:10.1080/13607863.2019.1667298

Glackin, Erin B., Forbes, Danielle, Heberle, Amy E., Carter, Alice S., & Gray, Sarah A. O. (2019). Caregiver self-reports and reporting of their preschoolers’ trauma exposure: Discordance across assessment methods. Traumatology, 25(3), 172-180. doi:10.1037/trm0000179

Habayeb, Serene, Dababnah, Sarah, John, Aesha, & Rich, Brendan. (2019). Cultural experiences of arab american caregivers raising children with autism spectrum disorder. Journal of Autism and Developmental Disorders, No Pagination Specified-No Pagination Specified. doi:10.1007/s10803-019-04218-3

Halper, Leah R., Cowgill, Colleen M., & Rios, Kimberly. (2019). Gender bias in caregiving professions: The role of perceived warmth. Journal of Applied Social Psychology, 49(9), 549-562. doi:10.1111/jasp.12615

Hartley, Matthew, Dorstyn, Diana, & Due, Clemence. (2019). Mindfulness for children and adults with autism spectrum disorder and their caregivers: A meta-analysis. Journal of Autism and Developmental Disorders, No Pagination Specified-No Pagination Specified. doi:10.1007/s10803-019-04145-3

Hurley, Diarmuid, Swann, Christian, Allen, Mark S., Ferguson, Helen L., & Vella, Stewart A. (2019). A systematic review of parent and caregiver mental health literacy. Community Mental Health Journal, No Pagination Specified-No Pagination Specified. doi:10.1007/s10597-019-00454-0

Im, Jennifer, Mak, Susanna, Upshur, Ross, Steinberg, Leah, & Kuluski, Kerry. (2019). ‘the future is probably now’: Understanding of illness, uncertainty and end-of-life discussions in older adults with heart failure and family caregivers. Health Expectations: An International Journal of Public Participation in Health Care & Health Policy, No Pagination Specified-No Pagination Specified. doi:10.1111/hex.12980

Inbar-Furst, Hagit, Douglas, Sarah N., & Meadan, Hedda. (2019). Promoting caregiver coaching practices within early intervention: Reflection and feedback. Early Childhood Education Journal, No Pagination Specified-No Pagination Specified. doi:10.1007/s10643-019-00980-2

Jenkins, Yvonne. (2019). Caregivers for the elderly: Clinical issues and intervention. Women & Therapy, No Pagination Specified-No Pagination Specified. doi:10.1080/02703149.2019.1622905

Khazaeili, Mahnaz, Hajebi, Majid Zargham, Mohamadkhani, Parvaneh, & Mirzahoseini, Hasan. (2019). The effectiveness of Mindfulness-Based Intervention on anxiety, depression and burden of caregivers of multiple sclerosis patients through web conferencing. Journal of Practice in Clinical Psychology, 7(1), 21-32. doi:10.32598/jpcp.7.1.21

King, Alison, & Xu, Yaoying. (2019). Caregiver coaching for language facilitation in early intervention for children with hearing loss. Early Child Development and Care, No Pagination Specified-No Pagination Specified. doi:10.1080/03004430.2019.1658092

Lee, Yura, Xu, Ling, Kim, Bum Jung, & Chen, Lin. (2019). Leisure activity, gender and depressive symptoms among dementia caregivers: Findings from the reach ii. Aging & Mental Health, No Pagination Specified-No Pagination Specified. doi:10.1080/13607863.2019.1660853

Li, Lun, & Lee, Yeonjung. (2019). Employment adjustment and mental health of employed family caregivers in canada. Aging & Mental Health, No Pagination Specified-No Pagination Specified. doi:10.1080/13607863.2019.1647136

Liu, Huiying, Fang, Boye, Chan, Jieling, & Chen, Gengzhen. (2019). The relationship between comorbidities in dementia patients and burden on adult–child primary caregivers: Does having a secondary caregiver matter? International Journal of Mental Health Nursing, No Pagination Specified-No Pagination Specified. doi:10.1111/inm.12640

Lovell, Brian, & Wetherell, Mark A. (2019). Affiliate stigma, perceived social support and perceived stress in caregivers of children with autism spectrum disorder: A multiple mediation study. Archives of Psychiatric Nursing, No Pagination Specified-No Pagination Specified. doi:10.1016/j.apnu.2019.08.012

Møller, Jens-Jakob Kjer, Jespersen, Eva, Lindahl-Jacobsen, Rune, & Ahrenfeldt, Linda Juel. (2019). Associations between perceived information needs and anxiety/depressive symptoms among cancer caregivers: A cross-sectional study. Journal of Psychosocial Oncology, No Pagination Specified-No Pagination Specified. doi:10.1080/07347332.2019.1664699

Nehrig, Nicole, Shifrin, Maria, Abraham, Karen, & Chen, Cory K. (2019). The benefits and limitations of a behavioral intervention for caregivers of dementia patients: A qualitative study. Cognitive and Behavioral Practice, 26(3), 562-574. doi:10.1016/j.cbpra.2018.10.004

Pandya, Samta P. (2019). Meditation improves self-control in adhd-diagnosed children and empowers their primary caregiver grandparents. Child & Adolescent Social Work Journal, No Pagination Specified-No Pagination Specified. doi:10.1007/s10560-019-00636-5

Patel, Bina. (2019). A mixed methods inquiry caregivers of u.S. Veterans with sustained “invisible” injuries from iraq/afghanistan. Journal of Human Behavior in the Social Environment, No Pagination Specified-No Pagination Specified. doi:10.1080/10911359.2019.1623737

Pendergrass, Anna, Mittelman, Mary, Graessel, Elmar, Özbe, Dominik, & Karg, Nina. (2019). Predictors of the personal benefits and positive aspects of informal caregiving. Aging & Mental Health, 23(11), 1533-1538. doi:10.1080/13607863.2018.1501662

Perone, Angela K., Dunkle, Ruth E., Feld, Sheila, Shen, Huei-Wern, Kim, Min Hee, & Pace, Garrett T. (2019). Depressive symptoms among former spousal caregivers: Comparing stressors, resources, and circumstances of caregiving cessation among older husbands and wives. Journal of Gerontological Social Work, No Pagination Specified-No Pagination Specified. doi:10.1080/01634372.2019.1647906

Petrovsky, Darina V., Sefcik, Justine S., Hodgson, Nancy A., & Gitlin, Laura N. (2019). Harsh communication: Characteristics of caregivers and persons with dementia. Aging & Mental Health, No Pagination Specified-No Pagination Specified. doi:10.1080/13607863.2019.1667296

Pettigrew, Corinne, Brichko, Rostislav, Black, Betty, O'Connor, Maureen K., Austrom, Mary Guerriero, Robinson, Maisha T., . . . Albert, Marilyn. (2019). Attitudes toward advance care planning among persons with dementia and their caregivers. International Psychogeriatrics, No Pagination Specified-No Pagination Specified. doi:10.1017/S1041610219000784

Pinho, Sarah, & Pereira, Henrique. (2019). Sexuality and intimacy behaviors in the elderly with dementia: The perspective of healthcare professionals and caregivers. Sexuality and Disability, No Pagination Specified-No Pagination Specified. doi:10.1007/s11195-019-09589-0

Roberts, Emily, & Struckmeyer, Kristopher M. (2019). “Ours is the strangest situation, ours is different from most peoples”: Spousal caregiver perspectives on the complex challenges of dementia caregiving in late-life marriage. Marriage & Family Review, 55(6), 584-600. doi:10.1080/01494929.2019.1589613

Socci, Marco, Principi, Andrea, Di Rosa, Mirko, Carney, Patricia, Chiatti, Carlos, & Lattanzio, Fabrizia. (2019). Impact of working situation on mental and physical health for informal caregivers of older people with alzheimer’s disease in italy. Results from the up-tech longitudinal study. Aging & Mental Health, No Pagination Specified-No Pagination Specified. doi:10.1080/13607863.2019.1667295

Sperling, Scott A., Brown, Daniel S., Jensen, Christine, Inker, Jenny, Mittelman, Mary S., & Manning, Carol A. (2019). Families: An effective healthcare intervention for caregivers of community dwelling people living with dementia. Aging & Mental Health, No Pagination Specified-No Pagination Specified. doi:10.1080/13607863.2019.1647141

Stjernswärd, Sigrid, & Hansson, Lars. (2019). A qualitative study of caregivers’ experiences, motivation and challenges using a web-based mindfulness intervention. Community Mental Health Journal, No Pagination Specified-No Pagination Specified. doi:10.1007/s10597-019-00477-7

Szabo, Shelagh, Lakzadeh, Pardis, Cline, Stephanie, Palma dos Reis, Rodrigo, & Petrella, Robert. (2019). The clinical and economic burden among caregivers of patients with alzheimer's disease in canada. International Journal of Geriatric Psychiatry, No Pagination Specified-No Pagination Specified. doi:10.1002/gps.5182

Vandepitte, Sophie, Putman, Koen, Van Den Noortgate, Nele, Verhaeghe, Sofie, & Annemans, Lieven. (2019). Effectiveness of an in-home respite care program to support informal dementia caregivers: A comparative study. International Journal of Geriatric Psychiatry, No Pagination Specified-No Pagination Specified. doi:10.1002/gps.5164

Venta, Amanda, Galicia, Betsy, Bailey, Cassandra, Abate, Anna, Marshall, Kaisa, & Long, Tessa. (2019). Attachment and loss in the context of us immigration: Caregiver separation and characteristics of internal working models of attachment in high school students. Attachment & Human Development, No Pagination Specified-No Pagination Specified. doi:10.1080/14616734.2019.1664604

Wang, Lu, Xu, Jiangling, Zou, Haiou, Zhang, Haiyu, & Qu, Yanhua. (2019). Violence against primary caregivers of people with severe mental illness and their knowledge and attitudes towards violence: A cross-sectional study in china. Archives of Psychiatric Nursing, No Pagination Specified-No Pagination Specified. doi:10.1016/j.apnu.2019.08.009

Weiler, Lindsey M., Scafe, Meredith, Spencer, Renée, & Cavell, Timothy A. (2019). Caregiver-initiated mentoring: Developing a working model to mitigate social isolation. Clinical Social Work Journal, No Pagination Specified-No Pagination Specified. doi:10.1007/s10615-019-00723-1

Wen, Fur-Hsing, Chou, Wen-Chi, Chen, Jen-Shi, Chang, Wen-Cheng, Hsieh, Chia-Hsun, Shen, Wen Chi, & Tang, Siew Tzuh. (2019). Associations of preloss and postloss factors with severe depressive symptoms and quality of life over the first 2 years of bereavement for family caregivers of terminally ill cancer patients. Psycho-Oncology, No Pagination Specified-No Pagination Specified. doi:10.1002/pon.5201

Williamson, Heather J., Brennan, Alissa C., Tress, Samantha F., Joseph, Darold H., & Baldwin, Julie A. (2019). Exploring health and wellness among native american adults with intellectual and/or developmental disabilities and their family caregivers. Journal of Applied Research in Intellectual Disabilities, No Pagination Specified-No Pagination Specified. doi:10.1111/jar.12664

Yang, Zongfang, Tian, Yuling, Fan, Ying, Liu, Long, Luo, Yanhong, Zhou, Liye, & Yu, Hongmei. (2019). The mediating roles of caregiver social support and self-efficacy on caregiver burden in Parkinson's disease. Journal of Affective Disorders, 256, 302-308. doi:10.1016/j.jad.2019.05.064

Yu, Yue, McGrew, John H., & Boloor, Jorgina. (2019). Effects of caregiver-focused programs on psychosocial outcomes in caregivers of individuals with asd: A meta-analysis. Journal of Autism and Developmental Disorders, No Pagination Specified-No Pagination Specified. doi:10.1007/s10803-019-04181-z

 55 Websites:

 

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