Published on Monday, 31 January 2022 20:50
Written by Grace Herman, LMSW
When we hear the word dementia, many of us think about someone who is older. You may know someone living with dementia such as a grandparent, friend, or neighbor.
According to the Centers for Disease Control and Prevention (CDC), in 2020 approximately 5.8 million Americans were living with Alzheimer’s disease. The numbers are projected to increase to 14 million by 2060. Dementia is an umbrella term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Although the disease is associated with older adults, dementia is not an age related illness. According to the Alzheimer’s Association, there are more than 6 million Americans living with younger-onset Alzheimer’s disease, many of them are in their 40s-50s. Many people who are living with young- onset dementia often progress through the disease process quicker than a person with late-onset dementia; therefore their care needs are often changing rapidly and are often complex.
Individuals living with young-onset dementia encounter constant barriers as they are not eligible for community based services that identify an age requirement of 65 years and older. Many of these families are under tight financial constraints due to having young children that they are caring for and or attempting to manage their own retirement and future. In some cases, families that are responsible for caring for this population are young adult children who are trying to navigate their own lives. Families are not always able to pay out of pocket for home based services due to the high costs. By the time these individuals arrive at the hospital, families have reached a crisis point.
Families are left feeling stressed, anxious, and are desperate to get the help that they need to support their loved one and themselves. It is quite common for families to be unprepared in how to navigate long term planning for their loved ones and are often stuck with the burden of making stressful decisions for their loved ones’ care under intense circumstances.
One of the first steps in navigating these challenges is early detection. Following up with your primary care provider and discussing any concerns you have with your cognition is so important. The earlier the detection the more proactive you can be in maintaining your health and well-being. Having long-term planning conversations with your family is another proactive step you can take regarding important health care decisions. This may include consulting with an elder law attorney and submitting applications to nursing homes since all have waitlists that could be years long.
Your local Area Agency on Aging is another organization that can help. The Area Agency on Aging provides social services, nutritional services, and family caregiver support services. Additional information about which towns each Agency on Aging covers and services offered can be accessed through State of Connecticut Department of Aging and Disability Services. The Alzheimer’s Association offers a 24/7 helpline to answer any questions and provide additional information about dementia and care needs at 1-800-272-3900.
More awareness needs to be made about young-onset Alzheimer’s disease and the impact is has on individuals and their families so that there can be an expansion of community based resources for this population. One step to advocate for change is talking to your local legislators. In the meantime, long-term planning is vital in managing ongoing needs and having a successful future.
Grace Herman, LMSW is a psychiatric social worker at Bristol Health’s Senior Behavioral Health Unit.