Still Their Parent

You were diagnosed while you still have school runs, homework and teenagers. Most of what is written about dementia is not written for you. This is.

Am I alone in this?

No, though it can feel that way. Young-onset dementia is less common than late-onset, but it is not rare.

A 2021 analysis in JAMA Neurology pooled 95 studies and estimated that young-onset dementia, starting before age 65, affects about 119 of every 100,000 people aged 30 to 64. Applied to the United States, that is roughly 200,000 people, and the authors thought it was probably an underestimate.

Most support groups, articles and services are built around people in their seventies and eighties, and their adult children. If you are 50 with a teenager at home and a mortgage, that can leave you feeling invisible. It is worth looking for young-onset support groups specifically. The Alzheimer's Association and several other organizations run them, many online.

How do I tell my children?

Simply, truthfully, and more than once. They have probably noticed something already.

Diagnosis often takes years in younger people. A 2013 study found an average of about 4.4 years from first symptoms to diagnosis for young-onset dementia, compared with 2.8 years for later onset. That means your children may have lived through a stretch of forgotten plans, irritability or changes nobody could explain. An honest explanation often comes as a relief.

• Use the real word, in language that fits their age. "I have an illness called Alzheimer's. It's in my brain, and it makes remembering and some kinds of thinking harder."
• Tell them what will not change. "I'm still your mom. I still love you. I'm still going to be at your games."
• Tell them it is not their fault, and that they cannot catch it.
• Expect questions later, sometimes at odd moments. Answer them as they come.
• Tell their school. A counselor or teacher who knows can watch for signs that your child is struggling.

Our article Telling the People You Raised has more on what to say at different ages.

How do I keep being their parent?

Focus on the parts of parenting that are about presence and values, and share the logistics with others.

Some parenting tasks will get harder: schedules, forms, homework help in subjects that move fast, driving. Others do not depend on memory at all: being there, listening, encouraging, showing them who you are and what you believe.

• Share the logistics. A family calendar on everyone's phones. Another adult who handles forms and permission slips.
• Keep your rituals. Bedtime, a weekly breakfast, a shared show. Rituals hold up when details do not.
• Record yourself for them. Letters for future birthdays, graduation, a wedding. Your voice telling family stories. Advice you want them to have.
• Let them see you living. Kids watch how a parent handles hard things. That is part of parenting too.

How do I protect their childhood?

Accept some help from them, but plan so that they do not become your main caregiver.

Older children often start helping without being asked: reminding, driving, covering for you. Some of that is normal and can even feel good to them. But children and teenagers who take on major caring roles can fall behind at school, lose time with friends and carry worry they do not talk about.

• Make sure there is an adult plan. Who is responsible for your care, so your children are not.
• Ask your children directly how they are doing, and whether they want help or a break from helping.
• Find them support of their own. A school counselor, a therapist, a group for children of parents with dementia.
• Keep their activities going. Sports, clubs, friends. Their life should not shrink to fit the illness.

Will my children get it too?

Usually, no. Most young-onset Alzheimer's is not caused by a single inherited gene. A genetic counselor can help you and your family understand your specific situation.

Fewer than 1% of Alzheimer's cases are caused by single inherited gene mutations that pass directly from parent to child. These tend to cause symptoms at a young age and run strongly in families. Most people with young-onset Alzheimer's do not have one of these mutations.

If your children, especially adult children, ask about their own risk, do not try to answer it alone. A genetic counselor can explain what testing can and cannot tell them, and help them decide whether they want to know. The National Society of Genetic Counselors has a directory.

What about money and work?

Plan early, before leaving work. The order you do things in can change what you receive.

Young-onset dementia often arrives in the most expensive years of life: a mortgage, children at home, college ahead. Early-onset Alzheimer's is on Social Security's Compassionate Allowances list, which fast-tracks disability claims, and your children may be eligible for benefits on your record too. Read your employer's long-term disability policy before you resign. Our articles Telling Work and on young-onset dementia and money go through the details.