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.

Family carers

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.cite journal | title=The MetLife Study of Alzheimer’s Disease: The Caregiving Experience | author=MetLife Mature Market Institute | date=August 2006 | url=http://www.metlife.com/WPSAssets/14050063731156260663V1FAlzheimerCaregivingExperience.pdf |format=PDF |accessdate=2008-02-12] Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues.cite journal |author=Schulz R, O'Brien AT, Bookwala J and Fleissner K|title=Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes |journal=Gerontologist |date=1995 Dec |volume=35 |issue=6 |pages=771–791 |pmid=8557205] cite journal |author=Cooper C, Balamurali TB, Livingston G |journal=International Psychogeriatrics |date=2007 Apr |volume=19 |issue=2 |pages=175–195 | epub=2006-09-28 |title=A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia |pmid=17005068 |doi=10.1017/S1041610206004297] [cite journal |author=Adams KB |journal=Journal of International Psychogeriatrics |title=Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non-caregiver spouses |year=2008 |month=June |volume=20 |issue=3 |pages=508-20 |pmid=17937825]

tressors

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."cite journal |title=Long-term care placement of dementia patients and caregiver health and well-being. |date=2004-08-25 |volume=292 |issue=8 |pages=961–967 |author=Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S |journal=Journal of the American Medical Association |pmid=15328328 |doi=10.1001/jama.292.8.961 ] 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.cite journal |author=Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, Engedal K, Laake K|title=The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease |journal=International Journal of Geriatric Psychiatry |date=2002 Jan |volume=17 |issue=1 |pages=78-84 |pmid=11802235 ] 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."cite journal |author=Hirono N, Kobayashi H, Mori E |title=Caregiver burden in dementia: evaluation with a Japanese version of the Zarit caregiver burden interview |journal=No To Shinkei |date=1998 Jun |volume=50 |issue=6 |pages=561–567 |language=Japanese |pmid=9656252] 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."cite journal |author=Marvardi M, Mattioli P, Spazzafumo L, et al. |title=The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study. |journal=Aging clinical and experimental research |date=2005 Feb |volume=17 |issue=1 |pages=46–53 |pmid=15847122 ] 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."cite journal |author=Leinonen E, Korpisammal L, Pulkkinen LM, Pukuri T |title=The comparison of burden between caregiving spouses of depressive and demented patients |journal=International journal of geriatric psychiatry |date=2001 Apr |volume=16 |issue=4 |pages=387-393 |pmid=11333426]

Grief

A caregiver is subject to anticipatory grief which varies as the dementia impairment progresses in the affected parent or spouse.cite journal |journal=Gerontologist |date=2001 Oct |volume=41 |issue=5 |pages=658–670 |title=A comprehensive, stage-sensitive model of grief in dementia caregiving. |author=Meuser TM, Marwit SJ |pmid=11574711] Feelings of loss and grief are frequent for current Alzheimer's family caregivers, who face anticipatory grief and ambiguous loss. [cite journal |author=Frank JB |title=Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis |journal=Am J Alzheimers Dis Other Demen |date=2007 Dec-2008 Jan |volume=22 |issue=6 |pages=516–527 |pmid=18166611 |doi=10.1177/1533317507307787] [cite web |title=Ronald Reagan, grief and bereavement: what we need to know about the grieving process |author=Timmermann Sandra | journal= Journal of Financial Service Professionals date=September 2004 |url=http://www.metlife.com/WPSAssets/12935104181198856300V1FRonaldReaganGriefandBereavementLDextended12.07.pdf |format=PDF |accessdate=2008-03-02]

Respite or day care

A Swedish study examined the effect on caregivers of patients who dropped out of respite 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.cite journal|journal=Archives of Gerontology and Geriatrics |date=2007 Sep-Oct |volume=45 |issue=2 |pages=137–150 | epub= 2006-11-28 |title=Does day care also provide care for the caregiver? |author=Måvall L, Thorslund M. |pmid=17129621 |doi=10.1016/j.archger.2006.10.005 ] 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."cite journal |title=Early community-based service utilization and its effects on institutionalization in dementia caregiving. |author=Gaugler JE, Kane RL, Kane RA, Newcomer R. |journal=Gerontologist. |date=2005 Apr |volume=45 |issue=2 |pages=177–185 |pmid=15799982]

ee also

* Elderly care
* Home care
* Respite care
* Long-term care
* Caregiver
* Carers rights movement
* Sundowning (dementia)

Further reading

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* [http://scholar.google.ca/scholar?hl=en&lr=&q=%22dementia+caregiving%22+OR+%22dementia+caregiver%22&btnG=Search Search Google Scholar on "dementia caregiving" OR "dementia caregiver"]
* re the Indianapolis Discovery Network for Dementia
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References