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Dementia Hotlines: Who to Call, When to Call, and What to Expect

7 minute readLast updated June 1, 2022
Written by Chacour Koop

For many families, navigating life with dementia is overwhelming. Whether your loved one was recently diagnosed with Alzheimer’s disease, or their dementia symptoms are becoming increasingly challenging to manage, it can be beneficial to find a trustworthy source for help.

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Dementia hotlines can support families by providing educational resources, access to support groups, and general legal and financial information. Sometimes called dementia helplines, these resources are typically offered through nonprofit organizations or government programs.

When to call a dementia hotline

It’s never too early or too late to call a dementia hotline. In fact, a single call to a dementia hotline can improve the mental health of a caregiver and their ability to take action, according to a 2021 study published in Patient Education and Counseling. The best time to call is whenever you need support or guidance.

“Some caregivers need help when the person is in the early stages of Alzheimer’s disease. Other caregivers look for help when the person is in the later stages of Alzheimer’s,” the National Institute on Aging reports. “It’s OK to seek help whenever you need it.”

Dementia hotlines may be able to answer important questions such as:

Dementia hotlines for patients and caregivers

If you’re searching for support, dementia hotlines offer different types of advice and expertise. Some hotlines specialize in providing information about specific types of dementia, such as Lewy body dementia or frontotemporal degeneration. Others could provide information about a wide range of topics related to brain health.

Here’s information about six dementia hotlines and how they can help you.

Alzheimer’s Association

The Alzheimer’s Association hotline is available 24 hours a day, seven days a week. Specialists and clinicians offer confidential support to people living with dementia, family members, caregivers, and the public.

The Alzheimer’s Association dementia hotline can help callers with information about:

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  • Symptoms of Alzheimer’s and other types of dementia
  • Local programs and services
  • Financial, legal, or care decisions
  • Treatment options

Contact information: Call 1-800-272-3900, chat online at alz.org, or reach out through an online form.

Alzheimer’s Foundation of America

The Alzheimer’s Foundation of America (AFA) dementia hotline is staffed entirely by licensed social workers specially trained in dementia care. It’s available seven days a week from 9 a.m. to 9 p.m. EST.

You can call the AFA hotline for answers to questions about:

  • Identifying signs and symptoms of dementia
  • Determining next steps after a diagnosis
  • Finding local caregiving support
  • Speaking to someone with dementia
  • Managing changes in behavior

Contact information: Call 1-866-232-8484, text 646-586-5283, or chat online at alzfdn.org.

Alzheimer’s and Related Dementias Education and Referral Center

A service of the National Institute on Aging, the Alzheimer’s and Related Dementias Education and Referral Center (ADEAR) provides information that’s researched and reviewed by scientists and health communicators.

The staff at ADEAR can assist you with:

  • Specific questions about Alzheimer’s disease
  • Access to publications about dementia, risk factors, caregiving and safety tips, and research
  • Information about clinical trials
  • Referrals to support services and research centers specializing in research and diagnosis

Contact information: Call 1-800-438-4380 on weekdays between 8:30 a.m. and 5 p.m. ET or email adear@nia.nih.gov.

The Association for Frontotemporal Degeneration

The Association for Frontotemporal Degeneration (AFTD) offers a dementia hotline for people living with frontotemporal degeneration (FTD), which is the most common form of dementia in people under 60.

On the AFTD hotline, you can learn more about:

  • Diagnosis or care information
  • Support groups near you
  • Access to an online support group that meets monthly over Zoom
  • Special Facebook groups for people with FTD
  • Opportunities to participate in research

Contact information: Call 1-866-507-7222 or email info@theaftd.org.

Dementia Society of America

The Dementia Society of America offers a hotline with information about Alzheimer’s disease and all common forms of dementia. The hotline is open to anyone with questions about dementia because the organization believes access to information will help people cope.

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Contact information: Call 1-800-336-3684.

Lewy Body Dementia Association

If you or a loved one has been diagnosed with Lewy body dementia, the Lewy Body Dementia Association (LBDA) provides a hotline with licensed professionals and a national network of volunteers.

The LBDA Lewy Line offers:

  • Emotional support
  • Referrals to LBDA programs and services, including support groups
  • Locations of community resources

Contact information: Call 1-800-539-9767 or email support@lbda.org.

Finding care for someone with dementia

If caring for your loved one at home is becoming too hard to navigate, you may want to consider in-home care options. If care outside the home is a better fit for your loved one, memory care communities and secured memory care units can offer specialized settings for people with Alzheimer’s disease and other types of dementia. These communities often include specially trained caregiversactivities to keep residents engaged, and human-centered architecture and design.

In addition to these options, the U.S. Department of Veterans Affairs may also offer memory care resources and benefits for veterans, surviving spouses, and other eligible individuals.

While this can be a challenging season of life, the Senior Living Advisors at A Place for Mom can help you find care for your loved one in your area, schedule tours, and compare available choices, all at no cost to you.

Sources:

Hodgson, N.A., Petrovsky, D.V., Finegan, F., Kallmyer, B.A., Pike, J., & Fazio, S. (2021, April). One call makes a difference: An evaluation of the Alzheimer’s Association National Helpline on dementia caregiver outcomesPatient Education and Counseling.

National Institute on Aging. (2019, Dec. 24). Getting help with Alzheimer’s caregiving.

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Written by
Chacour Koop
Chacour Koop is a former copywriter at A Place for Mom, where he published articles focused on Medicare, Medicaid, dementia, and wellness with a hope that other families can use the information to improve their lives. As a former family caregiver, Chacour Koop strives to bring practical knowledge about senior care to readers who are navigating this complex topic. Before writing about senior living, he was a journalist with bylines in The Associated Press, Miami Herald, Sacramento Bee, and dozens of other publications. He earned a degree in journalism from Eastern Illinois University and a master’s degree in public affairs reporting from the University of Illinois Springfield.
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Claire Samuels is a former senior copywriter at A Place for Mom, where she helped guide families through the dementia and memory care journey. Before transitioning to writing, she gained industry insight as an account executive for senior living communities across the Midwest. She holds a degree from Davidson College.
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