While the majority of dementia cases affect older adults, approximately 200,000 people in the United States under the age of 65 have early, or younger-onset, dementia. Alzheimer's type dementia makes up most of those cases, but frontotemporal dementia, Creutzfeldt-Jakob disease and vascular dementia are a few other types of dementia that are also seen in younger people.
Younger-onset dementia (dementia diagnosed in those younger than 65) can pose a different set of challenges than late onset, including difficulties in work, family, financial aspects and more.
As with any chronic disease, coping with a parent, spouse or partner with early onset dementia can pose challenges. Even though you may be right in the middle of adjusting to your new diagnosis, you might also be concerned about how to help your family cope with these changes. Here are 8 suggestions to consider as you adjust and support each other.
- Educate Your Family About What to Expect
Talk to your children and your partner about what they can expect as the disease progresses. Especially if you have younger children, it's important to reassure them that they can't catch dementia from you, and that nothing they did caused you to develop this disease.
You might hesitate in giving them details about Alzheimer's or the type of dementia you have, but it's important for them to be prepared if your memory lapses get worse or your mood and behavior change. If it's too hard for you to explain this to them, encourage them to go to an Alzheimer's Association support group or to learn more about early onset dementia online.
- Let Them Ask You Questions
Especially when you're first diagnosed, there may be different reactions. Older kids and a spouse may likely have known there's been a concern, but younger kids are usually totally unprepared. Even though it may be hard for you, let them ask questions, and aim to answer them with a combination of honesty and gentleness.
- Encourage Honest Expression of Feelings
No matter what age your family members are, it's important for both you and them to be able to express your feelings. It can be helpful to specifically name the feeling and share it with each other.
- Share Information with Teachers and School Counselors
If you have kids who are in school, you might consider giving the teachers and counselors a little information about early onset dementia and your diagnosis. Taking this step can foster increased understanding about the disease and the adjustments your child is going through.
- Encourage Family Members to Continue to Live Their Life
Some people respond to a chronic disease by feeling like they shouldn't do fun things, spend time away from the family or have outside interests. While having a loved one with early onset dementia does change things, it shouldn't completely remove all other aspects of life .
- Family Counseling
Counseling is strongly recommended to help you and your family cope with early-onset dementia. You can choose to receive counseling as a family, couple or individually. Being proactive in paying attention to the grieving process in dementia and learning how best to maintain your relationships is critical in coping well with the challenges of early onset dementia.
- Make and Record Memories
Consider asking a loved one to video special moments. Also, make a point of writing a letter to each of your family members. This may be an emotionally difficult exercise but it will be comforting to your loved ones if the time comes when you're not able to express thoughts well.
- Plan Ahead
Making decisions ahead of time is a gift to your family. There are multiple medical, financial and legal decisions that you can address now. If these are overwhelming, ask a family member or a friend to help you navigate these choices. The more you decide now, the more control you'll have over your situation. Also, making decisions ahead of time increases the ability of your family to honor your wishes and can provide them more with peace and confidence as they do so, knowing it's what you chose.
Alzheimer's Association. Family and Friends. Accessed January 29, 2013. http://www.alz.org/living_with_alzheimers_families_and_friends.asp#2