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Caregiving

Caregiving has become more visible with growing ranks of persons providing care to older adults.  Currently, an estimated 43.5 million people in the United States provide care for an older adult family member.  The majority of caregivers are female and are often employed (National Alliance for Caregiving, 2015).  Diversity in caregiving service delivery structures occurs across cultural groups, with variation in the role of family vs formal (paid) providers, and the specific intra-family role expectations (Gallagher-Thompson et al., 2000; Roth et al., 2003).

Along with social and emotional support, family caregivers assist with instrumental activities of daily living such as managing medications, appointments, transportation, and finances.  As diseases progress, caregivers may perform activities of daily living, such as dressing, bathing, feeding, and assistance with ambulation (O’Malley & Qualls, in press). Concern about the burdens of care on caregivers has spawned research that has documented the negative effects of caregiving on health that can include reduced immune function, increased levels of stress hormones, and increased rates of depression and anxiety (Connell et al., 2001; Joling et al., 2010; Magliano, Fiorillo, De Rosa, Malangone, & Maj, 2005; National Alliance for Caregiving, 2015; Roth et al., 2013; Schulz & Beach, 1999; Vitaliano, Murphy, Young, Echeverria, & Borson, 2011).

Consequently, the caregiving experience has been primarily conceptualized as burden and stress (Carbonneau, Caron & Desrosiers, 2010), with the main focus of research on the negative physical and emotional effects of the caregiving experience (i.e., burden and stress; Connell et al., 2001; Etters, Goodall, & Harrison, 2008; Pearlin et al., 1990).

The recent growth of research and intervention programs has increased our understanding of how multi-faceted the caregiving experience is (Matsumoto et al., 2007; Mosquera et al., 2015; Pearlin, Mullan, Semple, & Skaff, 1990; Zarit, Femia, Kim, & Whitlatch, 2010).  Caregivers can perceive their role positively and experience a sense of growth, competence, and fulfillment.  Some caregivers find their role enjoyable, satisfying, and gratifying (Connell et al., 2001), and many report feelings of self-growth, mastery, increased self-esteem, self-efficacy, and competence (Pearlin, Mullan, Semple, & Skaff, 1990).

A full biopsychosocial assessment can identify challenges and risks of caregiving.  Key components of a multi-disciplinary assessment include the caregiver’s burden, strengths, caregiver understanding and acceptance of the care recipient’s condition (O’Malley & Qualls, in press; O’Malley & Qualls, 2016), and overall health and well-being along with assessment of the family system (O’Malley & Qualls, 2016), the cultural, social, and spiritual meaning of caregiving, and sources of support (both within the family system and in the community).  Some common assessments of the caregiving experience include the Zarit Burden Interview (ZBI; Zarit, Orr, & Zarit; 1985) and the Caregiver Reaction Scale (CRS; O’Malley & Qualls, 2016).  Assessments of behavior problems include the Revised Memory and Behavior Problem Checklist (RMBPC; Teri et al., 1992) and the Behavior Problem Checklist (BPC; O’Malley & Qualls, in press).  For more information on specific assessment tools, see the APA Caregiver Briefcase (www.apa.org/pi/about/publications/caregivers/index.aspx) and the Rosalyn Carter Institute website (www.rosalynncarter.org).

Several interventions are helpful in working with caregivers. Theoretical models for working with caregivers include family systems, person-environment, medical family therapy, stress and coping model, and the illness beliefs model.  Intervention strategies commonly used with caregivers are psychoeducation, support groups, individual therapy, and family intervention. Higher rates of effectiveness are produced by interventions that are tailored to address particular needs (Belle et al., 2006; Collins, Murphy, & Bierman, 2004; Mittleman, Roth, Coon, & Haley, 2004; Zarit, Femia, Kim, & Whitlatch, 2010).  These interventions have been shown to be successful in reducing burden and increasing quality of life (Pinquart & Sörensen, 2006).  Higher rates of effectiveness are produced by interventions that involve multiple contacts over time, use specific intervention protocols, are tailored to specific needs, involve multiple components, include other family members, and are delivered locally and/or in-home including options using technology (Belle et al., 2006; Mittleman et al., 2004; Qualls & Williams, 2013; Zarit, 2009).

 

Look at the extensive assessment database of geriatric measures from the University of Alabama’s Alabama Research Institute on Aging! Register for access to the database HERE.

American Psychological Association (Producer). (2006). Parenting Our Elderly Parents. [DVD]. http://www.apa.org/pubs/videos/4310775.aspx

American Psychological Association (Producer). (2006). Parenting Our Elderly Parents. [DVD]. http://www.apa.org/pubs/videos/4310775.aspx

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American Psychological Association (Producer). (2006). Treating Alzheimer’s Disease Through Caregiver Family Therapy . [DVD]. http://www.apa.org/pubs/videos/4310741.aspx

American Psychological Association (Producer). (2006). Treating Alzheimer’s Disease Through Caregiver Family Therapy . [DVD]. http://www.apa.org/pubs/videos/4310741.aspx

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American Psychological Association’s Resources for Caregivers.

American Psychological Association’s Resources for Caregivers.

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Azar, A., Dadvar, F., Wilson-Arias, E., Jimenez, D., Dupart, T., Gray, H., and Gallagher-Thompson, D. (2009-2010). Coping with Caregiving: An Intervention Manual for Caregivers Where English is Not Their First Language. http://oafc.stanford.edu/manuals.html

Azar, A., Dadvar, F., Wilson-Arias, E., Jimenez, D., Dupart, T., Gray, H., and Gallagher-Thompson, D. (2009-2010). Coping with Caregiving: An Intervention Manual for Caregivers Where English is Not Their First Language. http://oafc.stanford.edu/manuals.html

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Belle, S., Burgio, L., and the REACH Investigators. (2006). Enhancing the quality of life of Hispanic/Latino, Black/African American, and White/Caucasian dementia caregivers: The REACH II randomized controlled trial. Annals of Internal Medicine, 145(9), 727-738.

Belle, S., Burgio, L., and the REACH Investigators. (2006). Enhancing the quality of life of Hispanic/Latino, Black/African American, and White/Caucasian dementia caregivers: The REACH II randomized controlled trial. Annals of Internal Medicine, 145(9), 727-738.

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Burgio et al. (2009). Implementing a Community-Based Program for Dementia Caregivers: An Action Guide using REACH OUT. Centers for Disease Control and Prevention, and the National Association of Chronic Disease Directors. http://www.cdc.gov/aging/caregiving/activities.htm

Burgio et al. (2009). Implementing a Community-Based Program for Dementia Caregivers: An Action Guide using REACH OUT. Centers for Disease Control and Prevention, and the National Association of Chronic Disease Directors. http://www.cdc.gov/aging/caregiving/activities.htm

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Carbonneau, H., Caron, C., & Desrosiers, J. (2010). Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia, 9, 327-353. doi:10.1177/1471301210375316

Carbonneau, H., Caron, C., & Desrosiers, J. (2010). Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia, 9, 327-353. doi:10.1177/1471301210375316

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Caregiving Resources Made Easy: Where to Find Help in the Midst of a Crisis . [Online course]. http://www.cohealth.org/items.course.php?floor=&tagid=10&courseid=49

Caregiving Resources Made Easy: Where to Find Help in the Midst of a Crisis . [Online course]. http://www.cohealth.org/items.course.php?floor=&tagid=10&courseid=49

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Collins, L. M., Murphy, S. A., & Bierman, K. L. (2004). A conceptual framework for adaptive preventive interventions. Prevention Science, 5, 185-196. doi:10.1023/B:PREV.0000037641.26017.00

Collins, L. M., Murphy, S. A., & Bierman, K. L. (2004). A conceptual framework for adaptive preventive interventions. Prevention Science, 5, 185-196. doi:10.1023/B:PREV.0000037641.26017.00

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Connell, C. M., Janevic, M. R., & Gallant, M. P. (2001). The costs of caregiving: Impact of dementia on family caregivers. Journal of Geriatric Psychiatry and Neurology, 14, 179-187. doi:10.1177/089198870101400403

Connell, C. M., Janevic, M. R., & Gallant, M. P. (2001). The costs of caregiving: Impact of dementia on family caregivers. Journal of Geriatric Psychiatry and Neurology, 14, 179-187. doi:10.1177/089198870101400403

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Coon, D. W., Gallagher-Thompson, D., & Thompson, L. (2003). Innovative Interventions to Reduce Caregiver Distress: A Clinical Guide . New York, NY: Springer Publishing Company.

Coon, D. W., Gallagher-Thompson, D., & Thompson, L. (2003). Innovative Interventions to Reduce Caregiver Distress: A Clinical Guide . New York, NY: Springer Publishing Company.

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Dawson, P., Wells, D.L., & Kline, K. (1993) Enhancing the abilities of persons with Alzheimer’s and related dementias . New York: Springer.

Dawson, P., Wells, D.L., & Kline, K. (1993) Enhancing the abilities of persons with Alzheimer’s and related dementias . New York: Springer.

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Eldercare Locator, U.S. Administration on Aging. www.eldercare.gov. 1-800-677-1116

Eldercare Locator, U.S. Administration on Aging. www.eldercare.gov. 1-800-677-1116

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Elliott, A., Burgio, L., and DeCoster, J. (2010). Enhancing Caregiver Health: Findings from the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II Intervention. Journal of the American Geriatrics Society, 58:30–37.

Elliott, A., Burgio, L., and DeCoster, J. (2010). Enhancing Caregiver Health: Findings from the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II Intervention. Journal of the American Geriatrics Society, 58:30–37.

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Etters, L., Goodall, D., & Harrison, B. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428. doi:101111/J.1745-7599.2008.00342.x.

Etters, L., Goodall, D., & Harrison, B. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428. doi:101111/J.1745-7599.2008.00342.x.

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Family Caregiver Briefcase – Variations for Practice for Culturally Diverse Groups (American Psychological Association). http://www.apa.org/pi/about/publications/caregivers/practice-settings/cultural-issues/index.aspx

Family Caregiver Briefcase – Variations for Practice for Culturally Diverse Groups (American Psychological Association). http://www.apa.org/pi/about/publications/caregivers/practice-settings/cultural-issues/index.aspx

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Family Caregiver Briefcase http://www.apa.org/pi/about/publications/caregivers/index.aspx

Family Caregiver Briefcase http://www.apa.org/pi/about/publications/caregivers/index.aspx

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Gallagher-Thompson, D. G. Steffen, A. M., & Thompson, L. W. (2008). Handbook of behavioral and cognitive therapies with older adults . New York: Springer.

Gallagher-Thompson, D. G. Steffen, A. M., & Thompson, L. W. (2008). Handbook of behavioral and cognitive therapies with older adults . New York: Springer.

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Gallagher-Thompson, D., & Coon, D. W. (2007). Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22 (1), 37-5.

Gallagher-Thompson, D., & Coon, D. W. (2007). Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22 (1), 37-5.

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Gallagher-Thompson, D., Arean, P., Coon, D., Menendez, A., Takagi, K., Haley, W., Arguelles, T., Rubert, M., Lowestein, D., & Szapocznik, J. (2000). Development and implementation of intervention strategies for culturally diverse caregiving populations. In R. Schulz(Ed.). Handbook on dementia caregiving (pp. 151–185). New York: Springer.

Gallagher-Thompson, D., Arean, P., Coon, D., Menendez, A., Takagi, K., Haley, W., Arguelles, T., Rubert, M., Lowestein, D., & Szapocznik, J. (2000). Development and implementation of intervention strategies for culturally diverse caregiving populations. In R. Schulz(Ed.). Handbook on dementia caregiving (pp. 151–185). New York: Springer.

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Gallagher-Thompson, D., Solano, N., McGee, J.S., Krisztal, E., Kaye, J., Coon, D., & Thompson, L. W. (2002). Coping with caregiving: Reducing stress and improving quality of life. Manual developed at Stanford Univ. School of Medicine and VA Palo Alto Health Care System. http://oafc.stanford.edu/manuals.html

Gallagher-Thompson, D., Solano, N., McGee, J.S., Krisztal, E., Kaye, J., Coon, D., & Thompson, L. W. (2002). Coping with caregiving: Reducing stress and improving quality of life. Manual developed at Stanford Univ. School of Medicine and VA Palo Alto Health Care System. http://oafc.stanford.edu/manuals.html

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Gant, J. R., Steffen, A. M., Silberbogen, A. K. & Gallagher-Thompson, D. (2001). The dementia caregiving skills program: Reducing distress and enjoying time with your family member (coach’s manual). St. Louis, MO; University of Missouri at St. Louis. Coach Manual: www.umsl.edu/~steffena/documents/ExcerptFromCoachManual.pdf Caregiver Manual: www.umsl.edu/~steffena/documents/ExcerptFromCaregiverManual.pdf

Gant, J. R., Steffen, A. M., Silberbogen, A. K. & Gallagher-Thompson, D. (2001). The dementia caregiving skills program: Reducing distress and enjoying time with your family member (coach’s manual). St. Louis, MO; University of Missouri at St. Louis. Coach Manual: www.umsl.edu/~steffena/documents/ExcerptFromCoachManual.pdf Caregiver Manual: www.umsl.edu/~steffena/documents/ExcerptFromCaregiverManual.pdf

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Gaugler, J. E., Kane, R. L., & Newcomer, R. (2007). Resilience and transitions from dementia caregiving. Journal of Gerontology, 62B , 38-44.

Gaugler, J. E., Kane, R. L., & Newcomer, R. (2007). Resilience and transitions from dementia caregiving. Journal of Gerontology, 62B , 38-44.

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Gruetzner, H. (2001) Alzheimer’s: A caregiver’s guide and sourcebook . New York: John Wiley.

Gruetzner, H. (2001) Alzheimer’s: A caregiver’s guide and sourcebook . New York: John Wiley.

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Hilgeman, M. M., Allen, R. S., DeCoster, J., & Burgio, L. D. (2007). Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychology and Aging, 22 , 361-371. doi: 10.1037/0882-7974.22.2.361

Hilgeman, M. M., Allen, R. S., DeCoster, J., & Burgio, L. D. (2007). Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychology and Aging, 22 , 361-371. doi: 10.1037/0882-7974.22.2.361

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Joling, K. J., Van Hout, H. P. J., Schellevis, F. G., Van Der Horst, H. E., Scheltens, P., Knol, D. L., & Van Marwijk, H. W. J. (2010). 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. American Journal of Geriatric Psychiatry, 18, 146-153. doi:10.1097/JGP.0b013e3181bf9f0f

Joling, K. J., Van Hout, H. P. J., Schellevis, F. G., Van Der Horst, H. E., Scheltens, P., Knol, D. L., & Van Marwijk, H. W. J. (2010). 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. American Journal of Geriatric […]

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Laidlaw, K., Thompson, L. W., Dick-Siskin, L., & Gallagher-Thompson, D. (2003). Cognitive Behaviour Therapy with Older People . Chichester, West Sussex, England: John Wiley & Sons. (2 nd ed. expected in 2012)

Laidlaw, K., Thompson, L. W., Dick-Siskin, L., & Gallagher-Thompson, D. (2003). Cognitive Behaviour Therapy with Older People . Chichester, West Sussex, England: John Wiley & Sons. (2 nd ed. expected in 2012)

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Lichtenberg, P.A. (Ed.) (2010). Handbook of assessment in clinical gerontology (2nd edition). Burlington, MA: Academic Press.

Lichtenberg, P.A. (Ed.) (2010). Handbook of assessment in clinical gerontology (2nd edition). Burlington, MA: Academic Press.

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Loboprabhu, S., Molinari, V., & Lomax, J. (Eds.) (2006). Supporting the caregiver in dementia: A guide for health care providers . Washington DC: Johns Hopkins Press.

Loboprabhu, S., Molinari, V., & Lomax, J. (Eds.) (2006). Supporting the caregiver in dementia: A guide for health care providers . Washington DC: Johns Hopkins Press.

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Mace, N. & Rabins, P. V. (2001). The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life . New York: Warner Books.

Mace, N. & Rabins, P. V. (2001). The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life . New York: Warner Books.

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Magliano, L., Fiorillo, A., De Rosa, C., Malangone, C. & Maj, M. (2005). Family burden in long-term diseases: A comparative study in schizophrenia vs. physical disorders. Social Science & Medicine, 61, 313-322. doi:10.1016/j.socscimed.2004.11.064

Magliano, L., Fiorillo, A., De Rosa, C., Malangone, C. & Maj, M. (2005). Family burden in long-term diseases: A comparative study in schizophrenia vs. physical disorders. Social Science & Medicine, 61, 313-322. doi:10.1016/j.socscimed.2004.11.064

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Matsumoto, N., Ikeda, M., Fukuhara, R., Shinagawa, S., Iskikawa, T., Mori, T.,…Tanabe, H. (2007). Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dementia and Geriatric and Cognitive Disorders, 23, 219-224. doi:10.1159/000099472

Matsumoto, N., Ikeda, M., Fukuhara, R., Shinagawa, S., Iskikawa, T., Mori, T.,…Tanabe, H. (2007). Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dementia and Geriatric and Cognitive Disorders, 23, 219-224. doi:10.1159/000099472

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Mittleman, M. S., Roth, D. L., Coon, D. W., & Haley, W. E. (2004). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease. American Journal of Psychiatry, 161, 850-856. doi:10.1176/appi.ajp.161.5.850

Mittleman, M. S., Roth, D. L., Coon, D. W., & Haley, W. E. (2004). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease. American Journal of Psychiatry, 161, 850-856. doi:10.1176/appi.ajp.161.5.850

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Mosquera, I., Vergara, I., Larrañaga, I., Machón, M., del Río, M., & Calderón, C. (2015). Measuring the impact of informal elderly caregiving: A systematic review of tools. Quality of Life Research, 1-34. doi:10.1007/s11136-015-1159-4

Mosquera, I., Vergara, I., Larrañaga, I., Machón, M., del Río, M., & Calderón, C. (2015). Measuring the impact of informal elderly caregiving: A systematic review of tools. Quality of Life Research, 1-34. doi:10.1007/s11136-015-1159-4

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National Alliance for Caregiving (2015). Caregiving in the U.S. Executive Summary. Retrieved 24 July 2015 from: http://www.caregiving.org/caregiving2015/

National Alliance for Caregiving (2015). Caregiving in the U.S. Executive Summary. Retrieved 24 July 2015 from: http://www.caregiving.org/caregiving2015/

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