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Dementia & Family CaregivingRosanne DiZazzo-Miller, DrOT, OTRL, CDPAssistant Professor Wayne State UniversityOccupational Therapy Program

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Background

CLINICAL• Occupational Therapist (OT)• Traumatic Brain and Spinal Cord Injury Rehabilitation• Dementia Caregiver Trainer• Community Re-entryRESEARCH• Dementia Caregiver Training • Caregiver Needs• Family Quality of Life

https://www.alz.org/downloads/facts_figures_2013.pdf

• Projected Changes in Alzheimer’s by State• Effects of Caregiving• Common Caregiving Tasks

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The World Health Organization (2012) identifies a lack of awareness & understanding of dementia, such as the

impact on ADLs, as a barrier that impacts caregivers and families physically, psychologically, and

economically.

As such, caregiver data reflecting public health concerns demonstrates the need for effective

supportive services (RCI, 2012).

http://digitalcommons.wayne.edu/cgi/viewcontent.cgiarticle=1000&context=pharm_healthcare

Early Stage Caregivers

“I feel like everybody’s wanted to walk away rather than give me answers. When you have a specific problem, then you know how to address that problem, but when it’s all fuzzy, you don’t

know….I’d like somebody to give me a diagram.”

Middle Stage Caregivers

It would be kind of tricky setting it up but . . . a basic list of things, ah that . . . caregivers should do and then with in that, you know, daycare, legally, socially, with your family and so forth and so

on.”

Late Stage Caregivers

“It would be nice if you could just go to one place and go through everything, a check list of every single thing you really should consider if you have someone with dementia in your family.”

Service Professionals

“There’s a big disconnect that people don’t know about the programs, professionals don’t know. . . . People in their own communities are not aware. I think educating people locally like on some of these boards we sit on. . . . There’s a lot going on but I don’t know if everything is totally organized well as far as pulling all these resources together, and what’s out there, and those types of things .”

Understanding Resource Needs

“Feeling like you’re on this endless loop, running into walls, etcetera, because you’re running into

walls at home in the first place.”

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Feasibility

A significant improvement in caregiver knowledge was found in all three areas of training: communication/nutrition (N = 53, p < 0.000), transfers and toileting (N = 46, p = 0.003), and bathing and dressing (N = 45, p = 0.010).http://ajot.aota.org/article.aspx?articleid=1864930

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Environmental-based Theory & Programs

Theories– Competence Environmental Press (Lawton & Nahemow, 1973)– Person-Environment Fit (Letts et al., 1994)

Programs– Environmental-skill building (Gitlin et al., 2003)

– Brief home intervention (Dooley & Hinojosa, 2004)

– OT home intervention (Graff et al., 2003 & 2007)

– REACH II (Belle et al., 2006)

Gaps– Access– Lack of ADL focus – Levels of evidence

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Psychoeducational-based Theory and ProgramsTheories

– Person Control Theory (Schulz & Heckhausen, 1999)

– Family Stress & Coping (McCubbin, 1993)

– Stress Mediation Theory (Folkman, Lazarus, Gruen, & DeLongis, 1986)– Progressively Lowered Stress Threshold (Hall & Buckwalter, 1987)

Programs– Progressively lowered stress threshold (Gerdner et al., 2002)

– The Savvy Caregiver Program (Hepburn et al., 2003; Lewis et al., 2010) & The Minnesota Family Workshop (Ostwald et al., 2003)

– Neuropsychological rehabilitation (Avila et al., 2004)

Gaps– Lack of ADL focus– Little focus on occupational performance and satisfaction of caregiving

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Community-based Programs

Theories– Much of the community-based programs are situated within

psychoeducational theories

Program– Communication skills training (Done & Thomas, 2001)

• Two 1-hr sessions.• Significant reductions in problem communications.• Caregiver knowledge improvement in communication skills.

Gaps– Lack of ADL focus– Limited data on caregiver outcomes– Limited data on occupational performance and satisfaction

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Limitations within the Literature

• Inconsistent outcomes on ADLs throughout the caregiving literature.

• Six of eleven studies (55%) included ADL as an outcome (Avila et al., 2004; Belle et al., 2006; Dooley & Hinojosa, 2004; Gerdner et al., 2002; Gitlin et al., 2003; Graff et al.,

2003).

– Only four of the six (67%) reported significant results (Gitlin et al.,

2003; Avila et al., 2004 & Dooley & Hinojosa, 2004; Gerdner et al., 2002).

• ADLs included in background but not as an outcome (Done & Thomas, 2001; Graff et al., 2007; Hepburn et al., 2003; Lewis et al., 2010).

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ProblemThere are no known studies of how to successfully train caregivers in the occupational performance of ADLs.

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Research Design

A randomized control design will be used to test the effects of the Family Caregiver Training Program on caregiver knowledge, confidence, burden, depression, quality of life, occupational performance and satisfaction.

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Thank you!

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ReferencesAlzheimer’s Association. (2013). 2013 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 9(2), 1-69. Retrieved from http://www.alz.org/downloads/facts_figures_2013.pdf  

Avila, R., Bottino, C. M. C., Carvalho, I. A. M., Santos, C. B., Seral, C., & Miotto, E. C. (2004). Neuropsychological rehabilitation of memory deficits and activities of daily living in patients with Alzheimer’s disease: A pilot study. Brazilian Journal of Medical and Biological Research, 37, 1721-1729.  

Belle, S. H., Burglo, L., Burns, R., Coon, D., Czaja, S. J., Gallagher-Thompson, D., Gitlin, L. N., . . . Zhang, S. (2006). Enhancing the quality of life of dementia caregivers from ethnic or racial groups. Annals of Internal Medicine, 145, 727-738.

 

DiZazzo-Miller, R., Samuel, P. S., Barnas, J., & Welker, K. (2014). Addressing everyday challenges: Feasibility of a family caregiver training program. American Journal of Occupational Therapy, 68(2), 212-220.

Done, D. J., & Thomas, J. A. (2001). Training in communication skills for informal carers of people

suffering from dementia: A cluster randomized clinical trial comparing a therapist led workshop and a booklet. International Journal of Geriatric Psychiatry, 16, 816, 821.  

Dooley, N. R., & Hinojosa, J. (2004). Improving quality of life for persons with Alzheimer ’s disease and their family caregivers: Brief occupational therapy intervention. American Journal of Occupational Therapy, 58, 561-569.  

Gerdner, L.A., Buckwalter, K.C. & Reed, D. (2002). Impact of a psychoeducational intervention on caregiver response to behavioral problems. Nursing Research, 51(6), 363-374.

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References Gitlin, L. N., Winter, L., Corcoran, M., Dennis, M. P., Schinfeld, S., Hauck, W. W. (2003). Effects of the home environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH initiative. The Gerontologist 43(4), 532-546.  

Graff, M. J. L., Vernooij-Dassen, M. J. F. J., Hoefnagels, W. H. L., Dekker, J., & de Witte, L. P. (2003). Occupational therapy at home for older individuals with mild to moderate cognitive impairments and their primary caregivers: A pilot study. Occupational Therapy Journal of Research, 23(4), 155-164.

 Graff, M. J. L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, J., Hoefnagels, W. H. L., & OldeRikkert, M. G. M. (2007). Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial. The Journals of Gerontology, 62A(9), 1002-1009.

Hall, G. R., & Buckwalter, K. C. (1987). Progressively lowered stress threshold: A conceptual model for care of adults with Alzheimer’s disease. Archives of Psychiatric Nursing, 1(16), 399-406.

Hebert, L. E., Scherr, P. A., Bienias, J. L., Bennett, D. A., & Evans, D. A. (2004). State-specific projections through 2025 of Alzheimer’s disease prevalence. Neurology, 62(9), 1645. Available at http://www.neurology.org/content/62/9/1645.extract

Hepburn, K. W., Lewis, M., Sherman, C. W., & Tornatore, J. (2003). The savvy caregiver program: Developing and testing a transportable dementia family caregiver training program. The Gerontologist, 43(6), 908-915.

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References Lewis, M. L., Hobday, J. V., & Hepburn, K. W. (2010). Internet-based program for

dementia caregivers. American Journal of Alzheimer’s Disease & Other Dementias, 25(8), 674-679.

National Alliance for Caregiving and AARP. (2009). Caregiving in the U. S. Unpublished data analyzed under contract for the Alzheimer’s Association.

 Ostwald, S.K.; Hepburn, K.W.; Burns, T. (2003). Training family caregivers of patients with

dementia: A structured workshop approach. Journal of Gerontology of Nursing, 29(1), 37-44.  Rosalynn Carter Institute for Caregiving (RCI). (2012). Averting the caregiving crisis: An update.

Retrieved from http://www.rosalynncarter.org/UserFiles/File/PositionPaperUpdate3-19-12.pdf

World Health Organization (WHO). (2014). 10 Facts on dementia. Retrieved from http://www.who.int/features/factfiles/dementia/dementia_facts/en/

 World Health Organization. (2012). Dementia: A public health priority. Retrieved from

http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf 

Yaffe, M.J., P. Orzeck, and L. Barylak. (2008). Family physicians' perspectives on care of dementia patients and family caregivers. Canadian family physician Medecin de famille canadien, 54(7), 1008-15.