Caregiving and dementia
As populations age, caregiving and dementia become more common aspects of life. 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.
A small recent study in the US concluded that patients whose caregivers had a realistic understanding of the prognosis and clinical complications of late dementia were less likely to receive aggressive treatment near the end of life. "
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, and even psychological 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.
Shulz 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 by Hirono et al. they assessed that "the patients' functional and neuropsychiatric impairments were main patient's factors to increase 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." A Finnish study by Leinonen et al. found that "Among the general psychogeriatric patient groups, the caregiving spouses of demented patients with noncognitive psychiatric symptoms are the most burdened group. However, spouses of depressive patients are as much burdened as those of demented patients with mild to moderate memory impairment."
A caregiver is subject to anticipatory grief which varies as the dementia impairment progresses in the affected parent or spouse. Feelings of loss and grief are frequent for current Alzheimer's family caregivers, who face anticipatory grief and ambiguous loss.
Respite or day care
A Swedish study examined the effect on caregivers of patients who dropped out of respite care and day care, finding that the dropout patients' non-coresiding caregivers had "significantly higher values for worry, overload and role captivity, and a higher level of depression" than the caregivers of non-dropout. Gaugler et al. found that "those individuals who utilized in-home help services earlier in their dementia caregiving careers were more likely to delay institutionalization."
- 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 1903765668.
- Search Google Scholar on "dementia caregiving" OR "dementia caregiver"
- "Merging discovery with therapy: Second generation memory care debuts". Press release. 2008-02-19. http://www.eurekalert.org/pub_releases/2008-02/iu-mdw021908.php. Retrieved 2008-02-19. (announced the Indianapolis Discovery Network for Dementia)
- "Investigating Caregivers’ Attitudes and Needs (I CAN) Survey". Alzheimer's Foundation of America. Archived from the original on 2006-06-18. http://replay.waybackmachine.org/20060618234555/http://www.alzfdn.org/survey.shtml.
- "Investigating Caregivers’ Attitudes and Needs (I CAN 2) Survey". Alzheimer's Foundation of America. Archived from the original on 2007-10-27. http://web.archive.org/web/20071027120757/http://www.alzfdn.org/surveys/index.shtml. Retrieved 2008-02-26.
- "The MetLife Market Survey of Adult Day Services & Home Care Costs" (PDF). MetLife. 2007-09. http://www.metlife.com/WPSAssets/18746211091190810760V1F2007ADSHCCStudy.pdf.
- Mace, Nancy L.; Rabins, Peter V. (2006). The 36-Hour Day (4th ed.). Baltimore: Johns Hopkins University Press. pp. 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. http://www.nia.nih.gov/Alzheimers/Publications/CaringAD/.
- "What to Expect When Living With Alzheimer's Disease". Visiting Nurse Service of New York. http://www.vnsny.org/home-health-care-and-you/education/living-with-alzheimers-disease/. Retrieved 2011-03-30.
- 2010 : Blank (L'absence) by Cyril de Gasperis
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- 2007 : Away from Her by Sarah Polley
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- http://www.nytimes.com/2009/10/20/health/20well.html Treating Dementia, but Overlooking Its Physical Toll
- MetLife Mature Market Institute (August 2006) (PDF). The MetLife Study of Alzheimer’s Disease: The Caregiving Experience. http://www.metlife.com/WPSAssets/14050063731156260663V1FAlzheimerCaregivingExperience.pdf. Retrieved 2008-02-12.
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