Filling an Unmet Need: A Support Group for Early Stage/ Young Onset Alzheimer’s Disease and Related Dementias: Offered by the Alzheimer’s Association of West Virginia (Special Issue: Commentary)
Alzheimer’s disease (AD), is the most common form of dementia, afflicting an estimated 5.3 million individuals nationwide. (1) Included in this figure are approximately 220,000-640,000 individuals considered to have “Early Onset” or “Young Onset” dementia,” defined as dementia occurring before the age of 65. (2) Alzheimer’s afflicts women more than men. In the Framingham Study, the estimated lifetime risk for Alzheimer’s was 9.1% for men and 17.2% for women. (1) As people age, their risk increases, and by 95 years of age, men have a greater than 12% risk and women a greater than 20% risk of acquiring the disease. (1) In West Virginia about 3,000 individuals by age 74 suffer from Alzheimer’s disease or a related dementia. (1) As the population ages, this number will increase. Therefore the West Virginia chapter of the Alzheimer’s Association decided to develop programs for the “Young Onset” population and their caregivers. The Alzheimer’s Association’s West Virginia Chapter has about 35 active affiliated caregiver support groups across the state. These are primarily run by lay volunteers in the community. A need was observed for support groups for those with early/young onset dementias and who are currently in the early or mild stages of dementia. To the best of our knowledge, no such group currently exists in West Virginia. Recent advances in diagnostic evaluations, coupled with increased advocacy efforts by celebrity figures and the media greatly raised community awareness of Alzheimer’s disease. Accordingly, this has brought the emerging population of individuals with early onset and early stage memory loss to the forefront. These individuals are aware of their decline in global functioning and struggle to maintain their social and occupational relationships and activities. Their problems differ from those of their care partners as well as from those of patients with more advanced dementia. In response to this growing dilemma, and in an effort to meet this population’s psychosocial and educational needs, specifically designed constituent support groups have been formed for this “Early Onset” cohort.