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[quote=Anonymous]My DH has an inherited form of younger-onset Alzheimer’s and our kids are now in their late twenties.

It is going to be a defining life experience for your son, no matter how much or little he is involved, and you will need to learn everything you can about the disease of dementia so that you can help him, even if you have no direct contact with his father.

Yesterday I watched Emma Willis’s interview with Oprah and got some additional perspectives and tips. I try to learn a little bit at a time so that I can cope better, but also so I can help our kids to navigate this as well. Our kids have no peers/friends who have a parent with dementia. It is isolating and it feels like this disease landed like a meteor in their lives. They do not live close enough to be involved in day to day care, but their dad is not his best self, nor his old self, and it impacts them.

The brain changes that lead to Alzheimer’s (accumulation of amyloid and tau in the brain) begin years/decades ahead of the clinical symptom of memory loss according to his neurologist.

Educate yourself about behavioral changes in dementia. It can be subtle. But irritability, having no filter, abandoning relationships …. All of these can be symptoms of forms of dementia if that is indeed what your son’s father has. The patient has changes in their brain and can lose the ability to be compassionate, and appropriate, and to connect with others. It is progressive so it will not get better. Educate yourself so that you can educate your son and others in time as well. That is a gift that you can give to this situation.

There are resources at a nonprofit called Lorenzo’s House for the families of people with younger-onset dementia. Check out their website. They have many offerings for the various age groups. I attend a group for the female caregivers of men with younger onset dementia, but there are offerings for the 18-24 year old group which your son may find helpful  sometime. These are young people who have lived, or are still living, the experience of having a parent with dementia. I also watched a video of a panel of young adults talking about their experience. That was helpful, as many of them had advice for the other, healthy, parent on what would have been helpful to them.

Both you and your son will be impacted if the dad has younger onset dementia. You both may already have been impacted. It is a progressive and terminal diagnosis. And yes, in the case of my DH, it is inherited. That fact in itself adds a whole other factor for the offspring to deal with.

It’s a lot. Learn what you can so you can be there for your son. You will one day be in declining health yourself when you are old. Model the behavior and perspective and equanimity that you would want to see.

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