Caring for people with dementia
As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family members and friends, often from spouses and adult children. In most mild to medium cases of dementia the primary caregiver is a family member, usually a spouse or adult child. Over time more and more professional care in the form of nursing and other supportive care may be required, whether at home or in a long term care facility.
The role of family caregivers has also become more prominent, as care in the familiar surroundings of home may delay onset of some symptoms and postpone or eliminate the need for more professional and costly levels of care. Home-based care may entail tremendous economic, emotional costs as well. Family caregivers often give up time from work and forego pay in order to spend an average of 47 hours per week with an affected loved one, who frequently cannot be left alone. In a survey of patients with long term care insurance, the direct and indirect costs of caring for an Alzheimer's disease patient averaged $77,500 per year in the United States. Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues.
Schulz et al. concluded in a US study that "the transition to institutional care is particularly difficult for spouses, almost half of whom visit the patient daily and continue to provide help with physical care during their visits. Clinical interventions that better prepare the caregiver for a placement transition and treat their depression and anxiety following placement may be of great benefit to these individuals." Thommessen et al. found in a Norwegian study that the most common stressors reported were "disorganization of household routines, difficulties with going away for holidays, restrictions on social life, and the disturbances of sleep..." and that this was common to carers for dementia, stroke and Parkinson's disease patients. In a Japanese study, Hirono et al. assessed that "the patients' functional and neuropsychiatric impairments were the main patient factors which increased the caregiver's burden." An Italian study by Marvardi et al. found "that patients' behavioral disturbances and disability were the major predictors of the time-dependent burden; the psychophysical burden was explained mainly by caregiver anxiety and depression."
Respite or day care
Early utilization of in-home help services may delay institutionalization.
A 2010 review summarizes what is known about best practices for safe and stimulating environments for dementia.
|Wikiversity has learning materials about Caregiving and dementia|
- MetLife Mature Market Institute (August 2006). The MetLife Study of Alzheimer’s Disease: The Caregiving Experience (PDF). Retrieved 2008-02-12.
- Schulz R, O'Brien AT, Bookwala J and Fleissner K (December 1995). "Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes". Gerontologist 35 (6): 771–791. doi:10.1093/geront/35.6.771. PMID 8557205.
- Cooper C, Balamurali TB, Livingston G (April 2007). "A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia". International Psychogeriatrics 19 (2): 175–195. doi:10.1017/S1041610206004297. PMID 17005068. Unknown parameter
- Adams KB (June 2008). "Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non-caregiver spouses". Journal of International Psychogeriatrics 20 (3): 508–20. doi:10.1017/S1041610207006278. PMID 17937825.
- Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S (2004-08-25). "Long-term care placement of dementia patients and caregiver health and well-being.". Journal of the American Medical Association 292 (8): 961–967. doi:10.1001/jama.292.8.961. PMID 15328328.
- Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, Engedal K, Laake K (January 2002). "The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease". International Journal of Geriatric Psychiatry 17 (1): 78–84. doi:10.1002/gps.524. PMID 11802235.
- Hirono N, Kobayashi H, Mori E (June 1998). "Caregiver burden in dementia: Evaluation with a Japanese version of the Zarit caregiver burden interview". No to Shinkei (in Japanese) 50 (6): 561–567. PMID 9656252.
- Marvardi M, Mattioli P, Spazzafumo L, et al. (February 2005). "The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study.". Aging clinical and experimental research 17 (1): 46–53. PMID 15847122.
- Meuser TM, Marwit SJ (October 2001). "A comprehensive, stage-sensitive model of grief in dementia caregiving.". Gerontologist 41 (5): 658–670. PMID 11574711.
- Frank JB (2007 December-2008 January). "Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis". Am J Alzheimers Dis Other Demen 22 (6): 516–527. doi:10.1177/1533317507307787. PMID 18166611.
- Timmermann Sandra (September 2004). "Ronald Reagan, grief and bereavement: what we need to know about the grieving process" (PDF). Journal of Financial Service Professionals. Retrieved 2008-03-02.
- Gaugler JE, Kane RL, Kane RA, Newcomer R. (April 2005). "Early community-based service utilization and its effects on institutionalization in dementia caregiving.". Gerontologist. 45 (2): 177–185. doi:10.1093/geront/45.2.177. PMID 15799982.
- Fleming, R; Purandare, N (2010 Nov). "Long-term care for people with dementia: environmental design guidelines.". International psychogeriatrics / IPA 22 (7): 1084–96. doi:10.1017/S1041610210000438. PMID 20478095.
- Next Step in Care: free, downloadable resources for family caregivers and health care providers
- Carol Levine, ed. (2004). Always On Call: When Illness Turns Families into Caregivers (2nd ed.). Vanderbilt University Press for the United Hospital Fund. ISBN 0-8265-1461-8.
- Cavaye Joyce (2006). Hidden Carers. Edinburgh: Dunedin Press. ISBN 1-903765-66-8.
- "Investigating Caregivers’ Attitudes and Needs (I CAN) Survey". Alzheimer's Foundation of America. Archived from the original on 2006-06-18.
- "Investigating Caregivers’ Attitudes and Needs (I CAN 2) Survey". Alzheimer's Foundation of America. Archived from the original on 2007-10-27. Retrieved 2008-02-26.
- "The MetLife Market Survey of Adult Day Services & Home Care Costs" (PDF). MetLife. 2007-09.
- Mace, Nancy L.; Rabins, Peter V. (2006). The 36-Hour Day (4th ed.). Baltimore: Johns Hopkins University Press. p. 324. ISBN 0-8018-8509-4
- Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging. US Department of Health and Human Services, National Institute on Aging, National Institutes of Health. 2009.
- "What to Expect When Living With Alzheimer's Disease". Visiting Nurse Service of New York. Retrieved 2011-03-30.
- "Effective Communication with Alzheimer's Patients". Care Communities. Retrieved 2011-08-09.