Dementia continues to be a societal enigma. Scientists have discovered no cure, nor the exact causation determined. The majority of persons with dementia (PWD) are identified with a diagnosis of Alzheimer’s disease. However, several other categories of dementia receive minimal attention.
One classification of dementia is the behavioral-variant frontotemporal lobar degeneration that is described as primary progressive aphasia, Pick’s disease, corticobasal degeneration and progressive supranuclear palsy. Nerve cells in the front and side regions of the brain are especially affected.
The symptoms may occur in those age 65 years and older, similar to Alzheimer’s, but most people develop symptoms at a younger age. About 60 percent of people are ages 45 to 60 and accounts for about 10 percent of PWD.
Frontotemporal dementia (FTD) is characterized by changes in behavior, personality, language and/or motor skills, as well as deterioration in a person’s ability to function and is a progressive disease. The effects of FTD, however, are just as devastating as those with Alzheimer’s disease, and there is no cure.
Recently, I had the chance to meet and interact with the leaders of the Connecticut Frontotemporal Dementia (FTD) Foundation. Esther Harvey and children Meghan and Jim Roscoe, Keith and Vanessa Harvey, and Shannon Harvey established the foundation in honor of her husband and the children’s father Kevin Harvey. Kevin was diagnosed with FTD in 2007 at age 52. The family is committed in their quest to honor Kevin’s memory by engaging in educational and outreach activities to help others who face similar challenges in caring for persons with FTD.
The Connecticut Frontotemporal Dementia Foundation’s mission is to: promote the funding necessary for research in finding the cause, therapies, and cures for FTD; support those diagnosed with FTD along with their families and caregivers; educate health professionals so that they have the knowledge and skills to work with FTD patients and families; and advocate with public officials to provide adequate and appropriate programs and services.
The CT FTD Foundation offers support group meetings for all caregivers and families. The support group meetings are a chance for everyone to share their experiences and express concerns. It also gives a chance to share ideas that have worked for other caregivers going through the same experience. Meetings are informal and held the third Sunday of every month. The remaining dates in 2018 are Oct. 21, Nov. 18, and Dec. 16. The CT FTD Foundation hosts the free meetings. For more information contact email@example.com and twitter page @ctftdfoundation, and facebook facebook.com/TheCTFTDFoundationInc .
In addition, the foundation has several fund raising events each year: A wine tasting social and a golf tournament.
My meeting with the Harvey family was encouraging and inspirational. They want to help families in Connecticut who are involved with caring for persons with FTD through the efforts of their foundation.
Michael M. Ego is a professor of Human Development and Family Studies at the University of Connecticut, Stamford. He teaches the course “Adulthood and Aging.”