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, friends, and local communities, but more often from spouses, adult children and other relatives. 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 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.

Stressors

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."

Anticipatory grief

Caregivers may experience anticipatory grief and ambiguous loss.

Respite or day care

Early utilization of in-home help services may delay institutionalization.

Environmental design

A 2010 review summarizes what is known about best practices for safe and stimulating environments for dementia.

See also

• Clinical Geropsychology
• Carers rights movement
• Direct support professional
• Personal Care Assistant

Further reading

• Next Step in Care: free, downloadable resources for family caregivers and health care providers