Living with Younger-Onset Dementia
Younger-onset Alzheimer’s disease, also called early-onset, is a form of Alzheimer’s disease in which individuals are diagnosed with the disease before age 65, most often in their 40s and 50s.
Symptoms of younger-onset Alzheimer’s disease, like memory loss, confusion, poor or decreased judgment and changes in personality and behavior, are similar to those of late-onset Alzheimer’s disease. In younger-onset Alzheimer’s, though, the person is typically still active with work, family and social activities when the symptoms begin.
Life will change with a diagnosis of younger-onset Alzheimer’s, especially as the disease progresses, but it is still possible to have a meaningful and productive life. The Alzheimer’s Association encourages individuals to continue with the activities they enjoy, to turn to family and friends for comfort and support, and to plan ahead for future financial, legal and caregiving needs.
Each person will experience the disease differently. There will be good and bad days. Professional counseling and joining a support group may be helpful, as these are settings where the person can discuss the disease along with their fears and feelings.
It’s essential for individuals to take good care of themselves, including regular checkups and following their doctor’s recommendations about diet, exercise and medication. This will become more challenging as the disease progresses, as the person living with Alzheimer’s Disease will have less and less capacity to make and follow sound recommendations. As the person’s symptoms progress, their physical appearance is likely to also change, prompting the need for frequent photos that may be needed for identification purposes. Perhaps starting a new routine of taking the person’s picture on the 1st day of the new month will help to ensure if the person becomes lost or wanders into unfamiliar territory, the caregiver/family will be able to readily identify their loved one.
Now is the time to plan ahead while the person can participate in the decision making. Talk to immediate family members about finances, household responsibilities, child rearing and future caregiving needs. It’s also important for the person to share his or her experiences with family and friends and ask for their support.
If the person is still working they should investigate every option: family and medical leave; employer sponsored disability programs; early retirement; and other benefits they may be available. Visiting memory care facilities, assisted living and long term care facilities can also be explored for future options.
A financial counselor can help sort through insurance, investments, Social Security Disability insurance and other financial options. Financial, legal and other important documents should be organized and placed in a safe, secure location where family members have access to the documents when needed. Considerations should be made for passwords to be centrally stored as well.
The person should decide what medical treatments they want to receive as the disease progresses. A legal document called an Advance Directive outlines wishes for future medical treatment.
The Alzheimer’s Association has many helpful resources for individuals with younger-onset Alzheimer’s and their families:
- Visit alz.org/livewell to start learning, planning and living well.
- Call the 24/7 Helpline: 800.272.3900.
· Locate an online support group at alzconnected.org or in your area at
· Use Alzheimer’s Navigator® to assess your needs and create an action at
· Take the free education program, Living with Alzheimer’s: For Younger-
Onset Alzheimer’s, online at alz.org/education or at an Alzheimer’s
Association office near you (alz.org/CRF).
Mary Bates, MS, CT, is a Certified Dementia Practitioner. She is the Assisted Living and Memory Care Director of Summit by Morrison, a senior living community offering independent living, assisted living, memory care, and respite care.
Through this column, Mary will share the experience, knowledge, and resources she and her team rely on, anticipating that it will be useful for anyone living with, caring for, or coming into contact with a person with dementia. Send your questions to Understanding Dementia at Summit, 56 Summit Drive, Whitefield, NH 03598 or email firstname.lastname@example.org. Mary will share information and answer as many questions as possible through this column.