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FCA has released an in-depth examination of 324 caregivers of persons with Parkinson’s disease (PD) and their care recipients. The caregivers entered the California Caregiver Resource Center system during 1999 and participated in an assessment interview.
Parkinson’s Disease Caregiving: A Descriptive Report profiles PD care recipients and caregivers, with special attention given to analysis of the latter group’s caregiving needs, health status and perceptions of caregiving role.
Similarities and differences between PD caregivers and other caregivers served by the CRC system are reviewed throughout the FCA report. The following are key highlights:
Caregivers
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The typical PD caregiver is a 64-year-old woman who has been caring for her husband for three years or more.
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On average, PD caregivers provide 96 hours of care per week, or 14 hours per day, to their care recipients.
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PD caregivers experience high levels of depression indicated by an average score of 19.88 on the Center for Epidemiological Studies Depression (CES-D) scale. (A score of 16 or higher on the CES-D demonstrates evidence of clinically depressive symptoms.)
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The typical care recipient is a 76-year-old man receiving care from his wife at home.
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PD care recipients are predominantly male (69%) compared to non-PD care recipients (47%).
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Approximately half of care recipients (51%) report annual household incomes of less than $30,000.
PD Caregivers Compared with Other Caregivers
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In comparison with caregivers of individuals with other brain impairments, PD caregivers are older, have been caring for their loved one for a longer period, and are more likely to be caring for a spouse.
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PD caregivers report increased depression, arthritis, asthma, diabetes, heart trouble, and high blood pressure compared to other caregivers (although these disorders are often common to caregivers of all types).
Caregiver Identified Needs
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At assessment, PD caregivers expressed the need for respite (85%), emotional support (83%), and behavior management (32%).
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The most common services planned for PD caregivers by Family Consultants were: family consultation (87%), follow-up information & referral (73%), in-home respite (70%), and support groups (48%).
Between 500,000 and 1.5 million people have Parkinson’s disease (PD) in the United States (National Institute of Neurological Disorders, 2000; National Parkinson Foundation, 1998). Approximately 50,000 new cases are reported each year, with the majority of cases occurring among persons age 60 years and older (American Parkinson’s Disease Association, 2000).
As the population of the United States ages, the incidence of Parkinson’s disease is expected to rise too. This change will affect the number of people needed to care for persons with this disease, especially families, who currently provide the majority of care for persons with Parkinson’s disease.
For more information about Parkinson’s Disease Caregiving: A Descriptive Report, please contact Family Caregiver Alliance at (800) 445-8106. The report is available for purchase for $20.00. Send a check to Family Caregiver Alliance, 180 Montgomery St., Ste. 1100, San Francisco, CA 94104.
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