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Dementia Alzheimers Caregivers: A Comprehensive Review of Interventions and Therapy Dementia of the Alzheimers type is a disease that presents various continuing and debilitating challenges to the life of the individual diagnosed. With no cure available, people diagnosed with Dementia struggle in daily routine. Mostly all individuals with Dementia of the Alzheimers Type will need some kind of assistance. Many of those diagnosed must rely on family to provide the prominent source of caregiving. These family caregivers are placed in a unique circumstance of obligation in which they undertake a significant amount of stress, burden, and grief. This situation is different from the role of the paid caregiver. Family caregivers live the situation every hour of the day and go through a mental strain unlike those who facilitate caregiving as a career. The purpose of this literature review is to examine the significant current forms of interventions and care available to mitigate adverse effects assumed by family caregivers of those with AD.
ABSTRACT INTRODUCTION METHODS Caregiver Needs Wackerbarth and Johnson (2002) identified essential need for caregivers is information including: respite and nursing home care services to help with caregiving assistance from health professionals support groups legal protection assistance with constant supervision educational and social support health plan coverage and best available care Support needs that were most important to caregivers included support for the one diagnosed with AD rather than support for the caregivers themselves Need for information greater than caregiver support needs
RESULTS DISCUSSION Results revealed the following benefits of counseling and other interventions for non-professional caregivers: Stress relief Self-efficacy Physiological improvements Reduced caregiver burden A common thread of success in relieving caregiver burden appeared to be human interaction. All of the literature researched showed subjects achieving benefits when having social interaction and actively working on health, behavior solutions, or betterment of knowledge. Example of Castro et al. exercise study
RECOMMENDATIONS FOR FUTURE RESEARCH Now that we know human interaction is crucial, what are the best interventions for specific needs? Needs of information vs. social support self-efficacy (e.g.) Narrow scope of interventions Technological interventions (e.g. internet or video-based) Group counseling Individual counseling types Counseling combined with pharmacotherapy Further narrowing of select therapy Behavioral Person-centered Emotion-focused Background-focused Mindfulness Formulate system to generalize results in categories Large scale collaboration needed/use of similar stress scales
SELECTED REFERENCES American Psychiatric Association (2002). Diagnostic and statistical manual of mental disorders (4th ed., Text Revision). Washington, DC: Author Baer, R. A. (2003). Mindfulness training as a clinical intervention: A conceptual and empirical review. Clinical Psychology: Science and Practice, 10(2), 125143. Castro, C. M, Wilcox, S., OSullivan, P., Baumann, K., and King, A. C. (2002). An exercise program for women who are caring for relatives with dementia. Psychosomatic Medicine 64(3), 458468. Gaugler, J. E., Roth, D. L., Haley, W. E., and Mittelman, M. S. (2008). Can counseling and support reduce burden and depressive symptoms in caregivers of people with alzheimers disease during the transition to institutionalization? Results from the New York University caregiver intervention study. Journal of the American Geriatrics Society 56(3), 421428. Glueckauf, R. L., Ketterson, T. U., Loomis, J. S., and Dages, P. (2004). Online support and education for dementia caregivers: Overview, utilization, and initial program evaluation. Telemedicine Journal and e-Health 10(2), 223232. Mittelman, M. S., Brodaty, H., Wallen, A. S., and Burns, A. (2008). A three-country randomized controlled trial of a psychosocial intervention for caregivers combined with pharmacological treatment for patients with alzheimer disease: Effects on caregiver depression. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry 16(11), 893904. Oken, B. S., Fonareva, I., Haas, M., Wahbeh, H., Lane, J. B., Zajdel, D., and Amen, A. (2010). Pilot controlled trial of mindfulness meditation and education for dementia caregivers. The Journal of Alternative and Complementary Medicine 16(10), 10311038. Theis, W., and Bleiler, L. (2012). 2012 Alzheimers disease facts and figures. Alzheimers & Dementia 8(2), 131168. Rabinowitz, Y. G., Mausbach, B. T., Thompson, L. W., and Gallagher-Thompson, D. (2007). The relationship between self-efficacy and cumulative health risk associated with health behavior patterns in female caregivers of elderly relatives with alzheimers dementia. Journal of Aging and Health 19(6), 946964. Schulz, R., OBrien, A., Czaja, S., Ory, M., Norris, R., Martire, L. M., . . . Belle, S. H. (2002). Dementia caregiver intervention research: In search of clinical significance. The Gerontologist 42(5), 589602. Teasdale, J. D., Segal, Z. V., & Williams, J. M. G. (2003). Mindfulness training and problem formulation. Clinical Psychology: Science and Practice, 10(2), 157-160. Wackerbarth, S. B., and Johnson, M. S. (2002). Essential information and support needs of family caregivers. Patient Education and Counseling 47(2), 95100. Williams, V. P., Bishop-Fitzpatrick, L., Lane, J. D., Gwyther, L. P., Ballard, E. L., Vendittelli, A. P., . . . Williams, R. B. (2010). Video-based coping skills to reduce health risk and improve psychological and physical well-being in alzheimers disease family caregivers. Psychosomatic Medicine 72(9), 897904.
Sean Sandag Wake Forest University Department of Counseling Interventions Counseling/Group Therapy study (Gaugler, Roth, Haley, & Mittelman, 2008): Experimental study conducted on 406 spouse caregivers over 9.5 years. Research Question: Does counseling relieve caregiver burden during institutionalization stage? Six individual and family counseling sessions and ad hoc counseling given based on caregiver needs of information. Experimental and control group experienced immediate relief of burden symptoms upon institutionalization, but the experimental group had lower symptoms before and lasted long after. Counseling Combined with Pharmacotherapy study (Mittelman, Brodaty, Wallen, & Burns, 2008): 158 spouse caregivers from three countries given anti-depressant donepezil. Experimental group given 5 individual/group counseling sessions and unlimited ad hoc counseling by telephone. Beck Depression scores disparity small at first but gap continued to widen between experimental and control group throughout five years of follow-up. Study demonstrated effective multinational psychosocial interventions for caregivers are achievable and practical and can provide significant benefits when the patient is taking drugs such as donepezil. Samples resided in United States, Australia, and the United Kingdom in attempt to make study generalizable. Does this study reasonably account for multicultural differences?
The Diagnostic and Statistical Manual-IV-TR characterizes Dementia as the development of multiple cognitive deficits (including memory impairment) that are due to the direct physiological effects of a general medical condition, to the persisting effects of a substance, or to multiple etiologies (American Psychiatric Association (APA), 2002, p. 147). More specifically to Alzheimers, the onset of Dementia of the Alzheimers Type is gradual and involves continuing cognitive decline (APA, 2002, p. 148). Diagnosis of Alzheimers can only be made after other etiologies are ruled out including: Central nervous system conditions (i.e. Parkinsons Disease) Systematic conditions (i.e. hypothyroidism, HIV infection) Substance abuse or head trauma Warning signs and symptoms of Dementia Alzheimers: Memory loss that disrupts daily life Challenges in planning or solving problems Difficulty completing familiar tasks at home, at work, or at leisure Confusion with time or place Trouble understanding visual images or spatial relationships Changes in mood and personality Withdrawal from work or social activities Misplacing things and losing the ability to retrace steps No treatment is available to stop or slow the Dementia of the Alzheimers type, but five drugs have been approved to temporarily improve systems although effectiveness varies across the population (Theis & Bleiler, 2012).
Interventions used measurements of self-efficacy to determine the mental health of caregivers. Self-efficacy is the belief of being able to produce desired results through ones own actions. Positive correlation between caregiver health benefits and controlling upsetting thoughts (Robinowitz, 2010). Caregivers want to feel a source of control in their own lives considering the lack of control associated with caregiving. Mindfulness--teaching people to pay attention in a particular way --has benefits across a wide range of disorders (Baer, 2003). Mindfulness study (Oken et al., 2010): Three groups were studied for seven weeks: a.) 90-minute Mindfulness-Based Cognitive Therapy sessions group b.) dementia education classes group, and c.) respite only care group RMBPC tests showed that the MBTC group and education group had improved self-efficacy and lower stress than the respite only group. Results did not show improvement of secondary outcomes including mood, fatigue, salivary cortisols, and cytokines. Enhancements of mindfulness were not observed despite MBTC intervention.
Search conducted over two weeks using the access to databases provided by the Wake Forest Z. Smith Reynolds Library. The Diagnostic Statistics Manual of Mental Disorder IV-TR was referenced to gain insight about the disease. Databases searched: PubMed, PsycInfo, ERIC Key words searched separately and together in database searches: Dementia Alzheimers, caregivers, interventions, counseling, mindfulness, Teasley, Segal, therapy, caregiver needs, self-efficacy Criteria of search: Dementia of the Alzheimers type Articles published from year 2000 to present Studies in which caregivers were limited to unpaid family members, as opposed to paid caregivers working privately or within institutions
Internet-Based Therapy study (Glueckauf, Ketterson, Loomis, & Dages, 2004): Alzheimers Caregiver Support Online also known as AlzOnline 21 participants completed six 45-minute live, interactive classes that focus on managing stress, enhancing interpersonal communication and family relationships, promoting emotional well-being, and setting and implementing personal caregiving goals. Results showed significant improvements in caregiver self-efficacy involving their ability to manage caregiver duties and difficult care recipient behavior, but little or no change in the caregiver experience including time burden, stress and positive caregiver appraisal Video-Based Coping Skills study (Williams et al., 2010): 116 family caregivers given five weeks of training through two video modules per week plus weekly coaching phone call The video modules consisted of coping techniques and ways to handle stressful situations in caregiving illustrated by dramatized examples of an effective way and a non-effective way to handle a situation Improved psychological and first phone physiological improvement (based on blood pressure)
Exercise study (Castro, Wilcox, OSullivan, Baumann, & King, 2002): 12-month at home exercise program/four sessions per week for 30 min. per session Both the experimental and control group received nutrition wellness education Social engagement and active participation in bettering their health may have produced enough benefits to reduce stress.
Significance: 5.4 million people have AD AD is the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age 65 years and older (Theis & Bleiler, 2012) In 2011, the average annual cost of a private nursing home room was $87, 235. This amounts to $239 a day. In 2011, more than 15 million family members and other unpaid caregivers provided an estimated 17.4 billion hours of care to people with AD. The physical and emotional impact of caregivers was shown to cause $8.7 billion in additional health care costs (Theis & Beiler, 2012). Caregiver Risks: Chronic disease and adverse health related physiological change which could result in death. Hypertension, reduced immune function, coronary heart disease, and cardiovascular disease. High amount of stress experienced by caregivers can elicit sleep deprivation, personality change, and loss of judgment.