Resources and Support for Younger-Onset Alzheimer's Disease
College basketball coach Pat Summitt’s recent diagnosis of Alzheimer’s disease has increased public awareness and discussion about “younger-onset” or “early-onset” Alzheimer’s disease. These terms are used when someone is diagnosed with Alzheimer’s at age 65 or younger. Click here to read a blog article I recently wrote for the Huffington Post about receiving and processing a diagnosis of younger-onset Alzheimer’s disease. It includes some of the steps individuals and families can take as they absorb this life-changing diagnosis.
Five percent of individuals diagnosed with Alzheimer’s disease experience “younger onset” and face unique challenges in accepting and responding to the diagnosis. Many people associate Alzheimer’s disease with old age, so the diagnosis can be quite shocking for younger individuals. Many are still active in their careers, social lives and raising their children. It can be especially difficult for children and spouses who are thrust into caregiving responsibilities far earlier than they ever imagined. It is important for diagnosed individuals and their families to communicate openly with one another and find ways to connect and form relationships with others in similar situations. In this way, they can share their experiences and receive support. The Alzheimer’s Association provides wonderful resources, tips and opportunities for supporting individuals and families as they begin this journey.
When families begin looking for support services, it’s important to find a program that tailors care and activities to the individual’s preferences and interests, as Sunrise provides in each of our memory care neighborhoods. When a resident moves in, our team meets with their family to create a comprehensive individualized service plan (ISP). The ISP helps determine appropriate care and services and the team refers to it every day to ensure consistency and quality care for each individual. Our life enrichment managers develop and engage residents in individualized life skills based on each resident’s unique talents, passions, career and past experience. Examples of life skills include performing music or creating art for others, performing office work, gardening, woodworking, cooking and much more. We understand that those with younger-onset Alzheimer’s have a greater need to remain physically active and involved in meaningful activities in the community, and make special effort to meet these needs.
Helping family and friends remain an integral part of a resident’s life by participating in activities and daily events is critical for all people who have Alzheimer’s disease, no matter their age or stage of life. At Sunrise, involving family and friends and encouraging them to spend quality time with their loved ones at the community is one of our Principles of Service. We offer regular support groups, resources and education for families, including an online training called A Journey of Discovery that teaches family members innovative techniques for communicating with loved ones with memory loss.
It‘s unfortunate that it takes a public figure being diagnosed in order for younger-onset Alzheimer’s to be spotlighted in the media. Thousands of middle-aged Americans face the effects of Alzheimer’s and other forms of memory loss each day. As more individuals share their stories and reach out for support, we can raise awareness and serve those who are affected by the disease with ever increasing skill and sensitivity.