Dementia runs in my family

Most people with Alzheimer’s have the late-onset kind, which starts at age 65 or later. Fewer than 10% get symptoms before 65.

If your parent was diagnosed in their late 70s or 80s, that is the common pattern, not a sign of a rare inherited form.

Alzheimer’s usually comes from many genes working together with lifestyle and environment. That leaves real room for action.

Many of the 14 risk factors, like smoking, inactivity and high blood pressure, can be changed whatever genes you inherited.

Dementia has several types. If you can, find out what type your relative was diagnosed with, and share it with your clinical provider.

To learn about the different types, see the Dementia: understanding it guide.

APOE e2 may give some protection against Alzheimer’s. If Alzheimer’s does happen, it usually starts later. Roughly 5% to 10% of people have this version.

APOE e3 is the most common version and is thought to have a neutral effect on Alzheimer’s risk.

APOE e4 increases the risk of Alzheimer’s and is linked to an earlier start in some groups. About 15% to 25% of people carry one copy, and 2% to 5% carry two. Two copies carry more risk than one, but not a certainty.

Inheriting e4 does not mean you will get Alzheimer’s. Some people with e4 never develop it, and many people with Alzheimer’s don’t have e4.

The link between APOE e4 and Alzheimer’s seems to differ by ancestry. A positive e4 result may not mean the same level of risk across all racial and ethnic groups.

The inherited kind usually shows up as Alzheimer’s in several family members, often starting in their 40s or 50s. That is very different from one grandparent diagnosed in their 80s.

Fewer than 10% of people with Alzheimer’s get symptoms before 65, and most people with younger-onset Alzheimer’s have the common, non-inherited kind.

Genetic counseling gives information and support to people who may be at risk for a genetic condition, including people with a family history. It’s recommended both before testing and when results come back.

The National Society of Genetic Counselors has a free “Find a Genetic Counselor” directory, with in-person and telehealth options in the U.S. and Canada.

There are currently few regulations for direct-to-consumer genetic tests. Results generally need more testing through a health care provider before they can guide health decisions, and most insurance doesn’t cover them.

A result is just information. It’s best talked through with a qualified professional.

The Genetic Information Nondiscrimination Act (GINA) stops health insurers from using genetic information to decide eligibility or prices, and stops employers from using it in job decisions.

GINA does not cover

• Employers with fewer than 15 employees
• Life, disability or long-term care insurance
• The military

Some states offer more protection. Think about this before you test.

A test result can affect you and your family members, who share your genes. It can help to picture how you would feel, and what you would do, with each possible result.

Ideas

• Invite family to do it with you: walks, quitting together, hearing checks
• Pick one habit you want to do differently from the family you grew up with
• Share this with your clinical provider
• Write down what you know about your relatives’ health: blood pressure, diabetes, hearing, smoking, mood

Hearing loss and high midlife LDL cholesterol are each linked to about 7% of dementia worldwide. Blood pressure, activity, smoking, mood and social contact all matter too.

For each habit in depth, see Protect your brain for life. For what to focus on at your age, see Brain health in your 20s to 60s+.

The earlier you lower risks, the better, but it is never too early or too late to start. That is true even for people with a higher genetic risk.

Several conditions can cause memory trouble that improves with care, including sleep apnea. If you’re worried, a check-up is the best way to find out what’s going on.

For the warning signs that are worth checking, see the Dementia: understanding it guide.

Nearly 13 million Americans give unpaid care to someone with dementia. Turning worry into small, steady habits for yourself can help you feel more in control.

See the Caring for someone with dementia: the basics and Caring for yourself as a long-term carer guides for support.

• Choose one habit to work on, so worry has somewhere useful to go
• Join a caregiver or family support group
• Notice when you’re “testing” your memory over and over, and gently stop
• Talk it through with a counselor, friend or faith leader

If worry is taking over your days, see the Anxiety: understanding it guide.

Ask older relatives what they remember: who had memory problems, roughly when it started, and what diagnosis they were given. Age at onset matters, because the rare inherited kind usually starts before 65.

One sibling may want a genetic test while another doesn’t. Both are valid. A result can affect relatives too, so it helps to think about how and whether to share it.

Ideas

• Book hearing, eye or blood pressure checks around the same time
• Cook a family meal with more vegetables and less salt
• Learn something new together
• Take a weekly family walk

The Alzheimer’s Association 24/7 Helpline (1-800-272-3900) offers free support for people living with dementia, caregivers, families and the public, in many languages.

The National Society of Genetic Counselors lists more than 3,300 genetic counselors in the U.S. and Canada. You can search by location or for telehealth.

Call or text 988 to reach the 988 Suicide & Crisis Lifeline.

Text HOME to 741741 to reach a trained Crisis Text Line counselor.

findahelpline.com lists free, confidential helplines by country. If you are in danger, call your local emergency number.