The Burden of Parkinson's Disease on Society, Family, and the Individual

Abstract

OBJECTIVE : To examine the burden of Parkinson's Disease (PD) on society, family, and the individual. SETTING : In‐home interviews in Central North Carolina. DESIGN : A cross‐sectional, descriptive study. PARTICIPANTS : A total of 109 people with PD. MEASURES : Standard instruments used to assess income, health status, health‐related costs, and household activities. SAMPLE : The sample was weighted toward individuals who were within the first 5 years of post‐PD diagnosis. RESULTS : The total per capita societal burden was approximately $6000 per year, the greatest single element of which was compensation for earnings loss for those less than age 65. Government insurance covered 85% of our sample. The largest components of family burden were the burden of providing informal caregiving and that of earnings loss. Spouses providing informal care did so a mean of 22 hours per week. Compared with a random sample of older people, our respondents spent much less time on house and yard work. CONCLUSION : The direct costs of the disease reflect a small portion of the burden. The hidden costs, in the form of lost wages, informal care, and changing roles are substantial. Their magnitude is even more important when we consider that the family generally lives on a fixed income, and the caregiver is an older aged spouse. Medical practitioners will best be able to intervene if they look holistically at the patient with this disease. When treating symptoms themselves, practitioners need to be aware of the high level of pain, fatigue, and depression associated with PD, even in the early stages. The results demonstrate clearly that family relationships are affected early, indicating the importance of providing early referrals to services such as home health, social workers/counseling, and well as PD support groups.