Caregiver Resources

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Resources for Caregiving:

40 Books, 55 Recent Articles, & 54 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 40 books (published 2010-2018), 55 recent articles (published in 2018), and 54 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:

40 Books (2010-2018):

55 Recent Articles (published in 2018):

Appleton, Damien, Robertson, Noelle, Mitchell, Laura, & Lesley, Rosie. (2018). Our disease: A qualitative meta-synthesis of the experiences of spousal/partner caregivers of people with multiple sclerosis. Scandinavian Journal of Caring Sciences, No Pagination Specified-No Pagination Specified. doi:10.1111/scs.12601

 

Band-Winterstein, Tova, Edelstein, Offer E., & Bachner, Yaacov G. (2018). Correlates of depression in caregivers of Ultra-Orthodox frail older adults. American Journal of Orthopsychiatry, No Pagination Specified-No Pagination Specified. doi:10.1037/ort0000337

 

Baruch, Ella, Pistrang, Nancy, & Barker, Chris. (2018). Psychological interventions for caregivers of people with bipolar disorder: A systematic review and meta-analysis. Journal of Affective Disorders, 236, 187-198. doi:10.1016/j.jad.2018.04.077

 

Behm, Lina, Björkman, Eva, & Ahlström, Gerd. (2018). Mental health and reactions to caregiving among next of kin of older people (65+) with multi-morbidity discharged home after hospitalization. Scandinavian Journal of Caring Sciences, No Pagination Specified-No Pagination Specified. doi:10.1111/scs.12592

 

Bhuyan, Rupaleem, Valmadrid, Lorraine, Panlaqui, Esel Laxa, Pendon, Novabella L., & Juan, Pearlita. (2018). Responding to the structural violence of migrant domestic work: Insights from participatory action research with migrant caregivers in canada. Journal of Family Violence, No Pagination Specified-No Pagination Specified. doi:10.1007/s10896-018-9988-x

 

Bibbo, Jessica, & Proulx, Christine M. (2018). The impact of a care recipient's pet on the instrumental caregiving experience. Journal of Gerontological Social Work, No Pagination Specified-No Pagination Specified. doi:10.1080/01634372.2018.1494659

 

Brain, Cecilia, Kymes, Steven, DiBenedetti, Dana B., Brevig, Thomas, & Velligan, Dawn I. (2018). Experiences, attitudes, and perceptions of caregivers of individuals with treatment-resistant schizophrenia: A qualitative study. BMC Psychiatry, 18.

 

Branger, Camille, Enright, Joe, O'Connell, Megan E., & Morgan, Debra G. (2018). Variance in caregiver burden predicted by patient behaviors versus neuropsychological profile. Applied Neuropsychology: Adult, 25(5), 441-447. doi:10.1080/23279095.2017.1323754

 

Brickell, Tracey A., French, Louis M., Lippa, Sara M., & Lange, Rael T. (2018). Burden among caregivers of service members and veterans following traumatic brain injury. Brain Injury, No Pagination Specified-No Pagination Specified. doi:10.1080/02699052.2018.1503328

 

Brickell, Tracey A., Lippa, Sara M., French, Louis M., Gartner, Rachel L., Driscoll, Angela E., Wright, Megan M., & Lange, Rael T. (2018). Service needs and health outcomes among caregivers of service members and veterans following TBI. Rehabilitation Psychology, No Pagination Specified-No Pagination Specified. doi:10.1037/rep0000249

 

Bui, Eric, Blackburn, Allyson M., Brenner, Lauren H., Laifer, Lauren M., Park, Elyse R., Fricchione, Gregory L., & Sylvia, Louisa G. (2018). Military and veteran caregivers' perspectives of stressors and a mind-body program. Issues in Mental Health Nursing, No Pagination Specified-No Pagination Specified. doi:10.1080/01612840.2018.1485796

 

Candrian, Carey, Tsantes, Alexandra, Matlock, Dan D., Tate, Channing, & Kutner, Jean S. (2018). "i just need to know they are going to do what they say they're going to do with my mom." understanding hospice expectations from the patient, caregiver and admission nurse perspective. Patient Education and Counseling, No Pagination Specified-No Pagination Specified. doi:10.1016/j.pec.2018.08.005

 

Champine, Robey B., Rozas, Lisa Werkmeister, Schreier, Alayna, & Kaufman, Joy S. (2018). Examining the service-related experiences and outcomes of caregivers involved in a system of care who experienced everyday discrimination. Journal of Community Psychology, No Pagination Specified-No Pagination Specified. doi:10.1002/jcop.22137

 

Chen, Chuqian, Chow, Amy Y. M., & Tang, Suqin. (2018). Professional caregivers' bereavement after patients' deaths: A scoping review of quantitative studies. Death Studies, No Pagination Specified-No Pagination Specified. doi:10.1080/07481187.2018.1488775

 

Chen, Peijun, Guarino, Peter D., Dysken, Maurice W., Pallaki, Muralidhar, Asthana, Sanjay, Llorente, Maria D., . . . Sano, Mary. (2018). Neuropsychiatric symptoms and caregiver burden in individuals with Alzheimer's disease: The TEAM-AD VA Cooperative Study. Journal of Geriatric Psychiatry and Neurology, 31(4), 177-185. doi:10.1177/0891988718783897

 

Corrêa, Márcio Silveira, de Lima, Daiane Borba, Giacobbo, Bruno Lima, Vedovelli, Kelem, Argimon, Irani Iracema de Lima, & Bromberg, Elke. (2018). Mental health in familial caregivers of alzheimer's disease patients: Are the effects of chronic stress on cognition inevitable? Stress: The International Journal on the Biology of Stress, No Pagination Specified-No Pagination Specified. doi:10.1080/10253890.2018.1510485

 

Cross, Ainslea J., Garip, Gulcan, & Sheffield, David. (2018). The psychosocial impact of caregiving in dementia and quality of life: A systematic review and meta-synthesis of qualitative research. Psychology & Health, No Pagination Specified-No Pagination Specified. doi:10.1080/08870446.2018.1496250

 

Fields, Beth, Rodakowski, Juleen, James, A. Everette, & Beach, Scott. (2018). Caregiver health literacy predicting healthcare communication and system navigation difficulty. Families, Systems, & Health, No Pagination Specified-No Pagination Specified. doi:10.1037/fsh0000368

 

Greenfield, Jennifer C., Hasche, Leslie, Bell, Lauren M., & Johnson, Heidi. (2018). Exploring how workplace and social policies relate to caregivers' financial strain. Journal of Gerontological Social Work, No Pagination Specified-No Pagination Specified. doi:10.1080/01634372.2018.1487895

 

Hansen, Barbara, Szaflarski, Magdalena, Bebin, E. Martina, & Szaflarski, Jerzy P. (2018). Affiliate stigma and caregiver burden in intractable epilepsy. Epilepsy & Behavior, 85, 1-6. doi:10.1016/j.yebeh.2018.05.028

 

Harvey-Knowles, Jacquelyn, Sanders, Elizabeth, Ko, Linda, Manusov, Valerie, & Yi, Jean. (2018). The impact of written emotional disclosure on cancer caregivers' perceptions of burden, stress, and depression: A randomized controlled trial. Health Communication, 33(7), 824-832. doi:10.1080/10410236.2017.1315677

 

Heng, Juit Lin, Fan, Emilia, & Chan, Ee-Yuee. (2018). Caregiving experiences, coping strategies and needs of foreign domestic workers caring for older people. Journal of Clinical Nursing, No Pagination Specified-No Pagination Specified. doi:10.1111/jocn.14619

 

Katz, Lynn Fainsilber, Fladeboe, Kaitlyn, King, Kevin, Gurtovenko, Kyrill, Kawamura, Joy, Friedman, Debra, . . . Stettler, Nicole. (2018). Trajectories of child and caregiver psychological adjustment in families of children with cancer. Health Psychology, 37(8), 725-735. doi:10.1037/hea0000619

 

Kind, Nina, Eckert, Anne, Steinlin, Célia, Fegert, Jörg M., & Schmid, Marc. (2018). Verbal and physical client aggression—A longitudinal analysis of professional caregivers' psychophysiological stress response and burnout. Psychoneuroendocrinology, 94, 11-16. doi:10.1016/j.psyneuen.2018.05.001

 

Kua, Zhong Jie, Pachana, Nancy A., Byrne, Gerard J., O'Sullivan, John D., Marsh, Rodney, Torbey, Elizabeth, . . . Dissanayaka, Nadeeka N. W. (2018). How well do caregivers detect depression and anxiety in patients with Parkinson disease? Journal of Geriatric Psychiatry and Neurology, 31(5), 227-236. doi:10.1177/0891988718788641

 

Landfeldt, Erik, Edström, Josefin, Buccella, Filippo, Kirschner, Janbernd, & Lochmüller, Hanns. (2018). Duchenne muscular dystrophy and caregiver burden: A systematic review. Developmental Medicine & Child Neurology, 60(10), 987-996. doi:10.1111/dmcn.13934

 

Lau, Bobo Hi-Po, Wong, Daniel F. K., Fung, Y. L., Zhou, Jillian, Chan, Cecilia L. W., & Chow, Amy Y. M. (2018). Facing death alone or together? Investigating the interdependence of death anxiety, dysfunctional attitudes, and quality of life in patient-caregiver dyads confronting lung cancer. Psycho-Oncology, No Pagination Specified-No Pagination Specified. doi:10.1002/pon.4773

 

Lin, Mei-Chen. (2018). Elder abuse and neglect: Examining caregiver characteristics and perceptions of their elderly care receiver's under-accommodative behavior. Journal of Family Communication, No Pagination Specified-No Pagination Specified. doi:10.1080/15267431.2018.1489810

 

Mori, Yuka, Downs, Jenny, Wong, Kingsley, & Leonard, Helen. (2018). Longitudinal effects of caregiving on parental well-being: The example of rett syndrome, a severe neurological disorder. European Child & Adolescent Psychiatry, No Pagination Specified-No Pagination Specified. doi:10.1007/s00787-018-1214-0

 

Oliveira, Alexandra Martini, Radanovic, Marcia, Homem de Mello, Patricia Cotting, Buchain, Patricia Cardoso, Dias Vizzotto, Adriana, Harder, Janaína, . . . Forlenza, Orestes Vicente. (2018). An intervention to reduce neuropsychiatric symptoms and caregiver burden in dementia: Preliminary results from a randomized trial of the tailored activity program–outpatient version. International Journal of Geriatric Psychiatry, No Pagination Specified-No Pagination Specified. doi:10.1002/gps.4958

 

Opsal, Tara, & Eman, Rebecca. (2018). Invisible vulnerability: Participant perceptions of a campus-based program for students without caregivers. Children and Youth Services Review, No Pagination Specified-No Pagination Specified. doi:10.1016/j.childyouth.2018.09.002

 

Panicker, Anuja S., & Ramesh, Sonali. (2018). Psychological status and coping styles of caregivers of individuals with intellectual disability and psychiatric illness. Journal of Applied Research in Intellectual Disabilities, No Pagination Specified-No Pagination Specified. doi:10.1111/jar.12496

 

Park, Juyoung, Tolea, Magdalena I., Arcay, Victoria, Lopes, Yve, & Galvin, James E. (2018). Self-efficacy and social support for psychological well-being of family caregivers of care recipients with dementia with lewy bodies, parkinson's disease dementia, or alzheimer's disease. Social Work in Mental Health, No Pagination Specified-No Pagination Specified. doi:10.1080/15332985.2018.1526756

 

Paúl, Constança, Teixeira, Laetitia, Duarte, Natália, Pires, Cátia L., & Ribeiro, Oscar. (2018). Effects of a community intervention program for dementia on mental health: The importance of secondary caregivers in promoting positive aspects and reducing strain. Community Mental Health Journal, No Pagination Specified-No Pagination Specified. doi:10.1007/s10597-018-0345-6

 

Peng, Hsi-Ling, Lorenz, Rebecca A., & Chang, Yu-Ping. (2018). Factors associated with sleep in family caregivers of individuals with dementia. Perspectives in Psychiatric Care, No Pagination Specified-No Pagination Specified. doi:10.1111/ppc.12307

 

Penning, Margaret J., & Wu, Zheng. (2018). Caregiving and union instability in middle and later life. Journal of Marriage and Family, No Pagination Specified-No Pagination Specified. doi:10.1111/jomf.12534

 

Prather, Aric A., Epel, Elissa S., Portela Parra, Eduardo, Coccia, Michael, Puterman, Eli, Aiello, Allison E., & Dhabhar, Firdaus S. (2018). Associations between chronic caregiving stress and T cell markers implicated in immunosenescence. Brain, Behavior, and Immunity, 73, 546-549. doi:10.1016/j.bbi.2018.06.019

 

Pudelewicz, Anna, Talarska, Dorota, & B?czyk, Gra?yna. (2018). Burden of caregivers of patients with alzheimer's disease. Scandinavian Journal of Caring Sciences, No Pagination Specified-No Pagination Specified. doi:10.1111/scs.12626

 

Puterman, Eli, Weiss, Jordan, Lin, Jue, Schilf, Samantha, Slusher, Aaron L., Johansen, Kirsten L., & Epel, Elissa S. (2018). Aerobic exercise lengthens telomeres and reduces stress in family caregivers: A randomized controlled trial - curt richter award paper 2018. Psychoneuroendocrinology, No Pagination Specified-No Pagination Specified. doi:10.1016/j.psyneuen.2018.08.002

 

Ruiz Fernández, María Dolores, & Ortega Galán, Ángela María. (2018). Evaluation of the perceived health of caregivers of patients in mild-to-moderate stage alzheimer's disease. Perspectives in Psychiatric Care, No Pagination Specified-No Pagination Specified. doi:10.1111/ppc.12306

 

Samadi, Sayyed Ali, Abdollahi-Boghrabadi, Ghasem, & McConkey, Roy. (2018). Parental satisfaction with caregiving among parents of children with autism spectrum disorders, attention deficit and hyperactivity, intellectual disabilities and typically developing. Early Child Development and Care, No Pagination Specified-No Pagination Specified. doi:10.1080/03004430.2018.1518903

 

Sambasivam, Rajeswari, Liu, Jianlin, Vaingankar, Janhavi A., Ong, Hui L., Tan, Min-En, Fauziana, Restria, . . . Subramaniam, Mythily. (2018). The hidden patient: Chronic physical morbidity, psychological distress, and quality of life in caregivers of older adults. Psychogeriatrics, No Pagination Specified-No Pagination Specified. doi:10.1111/psyg.12365

 

Sandstedt, Petter, Littorin, Susanne, Cröde Widsell, Gunilla, Johansson, Sverker, Gottberg, Kristina, Ytterberg, Charlotte, . . . Kierkegaard, Marie. (2018). Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study. Journal of Clinical Nursing, No Pagination Specified-No Pagination Specified. doi:10.1111/jocn.14593

 

Sheng, Nan, Ma, Jiali, Ding, Wenwen, & Zhang, Ying. (2018). Effects of caregiver-involved interventions on the quality of life of children and adolescents with chronic conditions and their caregivers: A systematic review and meta-analysis. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, No Pagination Specified-No Pagination Specified. doi:10.1007/s11136-018-1976-3

 

Shiraishi, Nao, & Reilly, Jacqueline. (2018). Positive and negative impacts of schizophrenia on family caregivers: A systematic review and qualitative meta-summary. Social Psychiatry and Psychiatric Epidemiology, No Pagination Specified-No Pagination Specified. doi:10.1007/s00127-018-1617-8

 

Song, Yeonsu, Washington, Donna L., Yano, Elizabeth M., McCurry, Susan M., Fung, Constance H., Dzierzewski, Joseph M., . . . Martin, Jennifer L. (2018). Caregiving-related sleep problems and their relationship to mental health and daytime function in female veterans. Behavioral Sleep Medicine, 16(4), 371-379. doi:10.1080/15402002.2016.1228640

 

Stamatopoulos, Vivian. (2018). The young carer penalty: Exploring the costs of caregiving among a sample of canadian youth. Child & Youth Services, No Pagination Specified-No Pagination Specified. doi:10.1080/0145935X.2018.1491303

 

Teague, Samantha J., Newman, Louise K., Tonge, Bruce J., & Gray, Kylie M. (2018). Caregiver mental health, parenting practices, and perceptions of child attachment in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(8), 2642-2652. doi:10.1007/s10803-018-3517-x

 

Teahan, Áine, Lafferty, Attracta, McAuliffe, Eilish, Phelan, Amanda, O'Sullivan, Liam, O'Shea, Diarmuid, & Fealy, Gerard. (2018). Resilience in family caregiving for people with dementia: A systematic review. International Journal of Geriatric Psychiatry, No Pagination Specified-No Pagination Specified. doi:10.1002/gps.4972

 

Terayama, Hideyuki, Sakurai, Hirofumi, Namioka, Nayuta, Jaime, Rieko, Otakeguchi, Koko, Fukasawa, Raita, . . . Hanyu, Haruo. (2018). Caregivers' education decreases depression symptoms and burden in caregivers of patients with dementia. Psychogeriatrics, No Pagination Specified-No Pagination Specified. doi:10.1111/psyg.12337

 

Tramonti, Francesco, Bonfiglio, Luca, Bongioanni, Paolo, Belviso, Cristina, Fanciullacci, Chiara, Rossi, Bruno, . . . Carboncini, Maria Chiara. (2018). Caregiver burden and family functioning in different neurological diseases. Psychology, Health & Medicine, No Pagination Specified-No Pagination Specified. doi:10.1080/13548506.2018.1510131

 

van der Lee, Jacqueline, Bakker, Ton J. E. M., & Dröes, Rose-Marie. (2018). Recovery from burden: Informal caregiver profiles that predict treatment success. International Psychogeriatrics, No Pagination Specified-No Pagination Specified. doi:10.1017/S1041610218000613

 

Wang, Xiao-Rong, Liu, Sheng-Xin, Robinson, Karen M., Shawler, Celeste, & Zhou, Lei. (2018). The impact of dementia caregiving on self-care management of caregivers and facilitators: A qualitative study. Psychogeriatrics, No Pagination Specified-No Pagination Specified. doi:10.1111/psyg.12354

 

Woodford, Joanne, Farrand, Paul, Watkins, Edward R., & Llewellyn, David J. (2018). "I don't believe in leading a life of my own, I lead his life": A qualitative investigation of difficulties experienced by informal caregivers of stroke survivors experiencing depressive and anxious symptoms. Clinical Gerontologist: The Journal of Aging and Mental Health, 41(4), 293-307. doi:10.1080/07317115.2017.1363104

 

Young, Lisa, Murata, Lisa, McPherson, Christine, Jacob, Jean Daniel, & Vandyk, Amanda Digel. (2018). Exploring the experiences of parent caregivers of adult children with schizophrenia: A systematic review. Archives of Psychiatric Nursing, No Pagination Specified-No Pagination Specified. doi:10.1016/j.apnu.2018.08.005

 

 

 

 54 Websites:

 

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