This massive resource list for Alzheimer’s disease and 17 related conditions is organized to help you quickly find the type of information you are looking for.
Free DIRECT download: Key resource list for Alzheimer’s disease and related conditions (patient handout). (Email subscribers get free access to all the resources in the Free Subscription Library.)
I’m blown away by how much information I’ve found in my notes and online over the past week. And I know I haven’t covered all the good resources out there. Please comment below if you think I should add something.
The embarrassing reason I wrote this post
All too frequently, I meet a family who has been dealing with dementia for years but doesn’t know what to expect or how to deal with what’s going on. I’m embarrassed to say that until the past week or so, my education efforts have been limited to pointing people to the Alzheimer’s Association.
I’ve had many of these resources in my notes or on my computer for years, and I’ve intended to make a more comprehensive handout for my patients. I never seemed to find the time. Now that other people are reading my blog and downloading my handouts, it’s motivated me to get my act together and to create something useful.
I’ve organized the links to allow you to quickly find what you are looking for. Here are the major categories:
- Basic information about dementia and related disorders
- Information in languages other than English
- Newsletters, blogs, and printed material
- Online and local support
- Research and clinical trials
- Resources for caregivers, family, and friends
- Resources for people living with dementia
- Resources for professionals
- Watch and listen to learn
- Tips for professionals
Basic information about dementia and related disorders
Find links to basic information, risk factors, symptoms, diagnosis, treatment, research, and related information. I cover:
- Progressive dementia (worsens over time)
- Related conditions that are progressive
- Related conditions that are stable or improving
Alzheimer’s Disease
- Alzheimer’s Association: Basics, symptoms, and brain changes, benefits of early diagnosis, care planning and assessment tools, diagnosis, early onset Alzheimer’s, myths, publications, research, risk factors, stages of the disease, treatment, virtual library, and warning signs.
- Aging Parents and Elder Care: Symptoms.
- Family Caregiver Alliance: Diagnosis, driving, sexuality.
- Geriatric Mental Health Foundation: Basics, symptoms, risk factors, diagnosis, treatments, role of geriatric psychiatrists, caring for the patient, caring for the caregiver, and resources (under Consumer/Patient information).
- Harvard Health Publication & Help Guide: Early warning signs, diagnosis, what to expect from your doctor, and types of tests.
- Mayo Clinic: Basics, symptoms, causes, risk factors, complications, prevention, diet and exercise , diagnosis, and treatment, exercise and nutrition, lifestyle and home remedies, alternative medicine, coping and support, preparing for your appointment, what to expect from your doctor, resources, early onset, stages.
- National Institute on Aging: Basics, causes, symptoms, diagnosis, treatment, and research.
- The U.S. Department of Veterans Affairs (VA): Basics and physical and mental changes to expect, myths and facts, and symptoms and diagnosis.
Chronic Traumatic Encephalopathy (CTE)
- Alzheimer’s Association: Causes, symptoms, diagnosis, treatment, and research.
- Mayo Clinic: Basics, symptoms, when to see doctor, causes, risk factors, prevention, diagnosis, treatment, preparing for your appointment, and what to expect from your doctor.
Creutzfeldt-Jakob disease
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Mayo Clinic: Basics, symptoms, causes, risk factors, complications, prevention, diagnosis, treatment, and preparing for your appointment.
- National Organization for Rare Disorders: Extensive information. Synonyms, subdivision, basics, signs and symptoms, causes, affected populations, related disorders, diagnosis, standard treatment, investigational therapies, supporting organizations, and references.
Dementia in Down syndrome
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
Frontotemporal dementia (FTD)
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Family Caregiver Alliance: Basics, symptoms, differences between FTD and other dementias, diagnosis, duration and treatment, and resources.
- National Institute on Aging: Symptoms, treatment and management, diagnosis, causes, types, basics, and resources.
- National Organization for Rare Disorders: Extensive information. Synonyms such as Pick’s disease, and subdivisions such as Primary Progressive Aphasia, basics, signs and symptoms by subtype, causes, affected populations, related disorders, diagnosis, treatment, investigational therapies, resources, and references.
HIV-associated Neurocognitive Disorder (HAND)
- Family Caregiver Alliance: Basics, facts, symptoms, diagnosis, treatment, advice for caregivers, and resources.
Huntington’s disease
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Family Caregiver Alliance: Basics, facts, symptoms, diagnosis, genetic testing, research, treatment, role of health professionals, support, and resources.
- Huntington’s Disease Society of America: Extensive information. Basics, scope, risk factors, genetic testing, prenatal testing, overview of juvenile onset, research, where to find help, and digital and print publications.
- National Organization for Rare Disorders: Extensive information. Synonyms, basics, signs and symptoms, causes, affected populations, related disorders, diagnosis, standard treatment, investigational therapies, supporting organizations, and references.
Hypoxic-anoxic brain injury
- Family Caregiver Alliance: Basics, causes, symptoms, predicting the outcome, treatment, advice for caregivers, and resources.
Korsakoff syndrome and Wernicke-Korsakoff syndrome
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Family Caregiver Alliance: Basics, symptoms, diagnosis, treatment, family issues, caregiver information, and resources.
- National Organization for Rare Disorders: Extensive information. Synonym, subdivisions, basics, signs and symptoms, causes, affected populations, standard therapies, investigational therapies, resources, supporting organizations, and references.
Lewy body dementia
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and dementia with Lewy bodies fact sheet (scroll down).
- Family Caregiver Alliance: Basics, caregiver’s role, facts, symptoms, diagnosis, comparison with Alzheimer’s and Parkinson’s, duration and treatment, and resources.
- National Institute on Aging: Research, treatment and management, diagnosis, symptoms, causes, and basics.
- Parkinson’s Foundation: Basics, symptoms, diagnosis, and treatment. Resource library (search “dementia” OR select “non-motor symptoms” under topic).
Mild Cognitive Impairment (MCI)
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Family Caregiver Alliance: Basics, facts, symptoms, causes, diagnosis and treatment, coping with MCI, changing daily routine, and resources.
- Parkinson’s Foundation: Basics, causes, symptoms, diagnosis, compared to Alzheimer’s, co-existing conditions, seeking help, and treatment.
Mixed dementia
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- National Institute on Aging: Basics.
Normal Pressure Hydrocephalus (NPH)
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Hydrocephalus Association: Basics, causes, symptoms, diagnosis, treatment, shunt systems, outcomes after shunt surgery, NPH left untreated, complications and risks, signs and symptoms of complications, and management. Publications and a resource library.
Posterior cortical atrophy
- Alzheimer’s Association: Basics, prevalence, symptoms, diagnosis, causes and risks, and treatment.
- Mayo Clinic: Basics, diagnosis, and treatment.
Parkinson’s disease dementia
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Parkinson’s Foundation: Lewy body dementia and Parkinson’s disease dementia, basics, symptoms, diagnosis, and treatment, predicting risk, and genetic factors. Resource library (search “dementia” OR select “non-motor symptoms” under topic).
Traumatic brain injury (TBI)
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- Brain Injury Association of America: Basics, diagnosis, treatment, what to expect, and frequently asked questions.
- Family Caregiver Alliance: Basics, facts, consequences, chances of recovery, recovery tips, rehabilitation, prevention, caregiving, Veteran Affairs, and resources.
- Mayo Clinic: Head injury and dementia risk.
- The U.S. Department of Veterans Affairs (VA): Basics and physical and mental changes to expect.
Vascular Dementia
- Alzheimer’s Association: Basics, symptoms, diagnosis, causes and risks, and treatment and fact sheet (scroll down).
- National Institute on Aging: Resources include articles and fact sheets.
Vitamin B12 deficiency
- Harvard Health Publication & Help Guide: Basics, symptoms, and treatment (scroll down).
- WebMD: Basics, diet, risk factors, symptoms, treatment, and prevention.
Information in languages other than English
- AARP and the Home Alone Alliance: Videos and downloadable PDFs about wound care and mobility in Spanish (scroll down).
- Alzheimer’s Association: Chinese, Japanese, Korean, Spanish, and Vietnamese.
- American Association for Geriatric Psychiatry: 20-page+ brochures in Spanish.
- Family Caregiver Alliance: Scroll down for fact sheets in Chinese, Korean, Spanish, and Vietnamese. Videos in various language on their YouTube channel.
- Hydrocephalus Association: Spanish.
- Mayo Clinic: Searchable database in Arabic, Mandarin Chinese, Portuguese, Spanish. (Note: if you get stuck in “Arabic”, there is a drop-down box in top left corner that allows you to select any language.)
- Parkinson’s Foundation: Spanish including printed material (select “En Español” under “Browse store” drop-down box).
Newsletters, blogs, and printed material
Newsletters and blogs
- Aging Life Care Association: blog (weekly updates).
- Alzheimer’s Association: Blog (Navigate “Help & Support” to “Community” to “Blog”).
- Family Caregiver Alliance: Blog, caregiver stories, and two newsletters: Connections for caregivers, and Caregiving Policy Digest for professionals.
- Hydrocephalus Association: Blog and newsletter.
- National Council on Aging: Weekly blog and newsletter.
- Parkinson’s Foundation: Blog.
Free printed educational materials
- Alzheimer’s Association: Print materials through your local chapter.
- American Association for Geriatric Psychiatry: 20-page+ brochures for small fee on healthy aging, sleep, Alzheimer’s for caregivers, and depression.
- Huntington’s Disease Society of America: Some publications are free, and some have a small cost.
- National Institute on Aging: Free through the mail, including Alzheimer’s Disease, Frontotemporal Disorders, The Dementias, Lewy Body Dementia, fact sheets, guides, and legal & financial planning advice.
- Parkinson’s Foundation: Free materials through the mail.
Online and local support
Online communities
- AARP: Caregiving forum and a forum on grief and loss.
- Aging Life Care Association: Listserv and social media.
- Aging Parents and Elder Care: Support group message board for caregivers.
- Alzheimer’s Association: ALZConnected (free online community open to anyone affected by any type of dementia).
- CaringBridge: Create a free, private, ad-free website seen only by people you invite. Keep your family and friends updated, coordinate assistance, and receive emotional support. You can also link your site to a fundraiser.
- Family Caregiver Alliance: an two online support groups: one for caregivers and one for LGBT caregivers.
- Huntington’s Disease Society of America: Online private support groups for members.
- Smart Patients: “an online community where patients and their families learn from each other”. The Family Caregiver Alliance has partnered with Smart Patients.
- SuperBetter.com: Designed by Jane McGonigal, a game designer, to help herself get better after suffering severe side-effects from a traumatic brain injury. A game that increases your resilience, “your ability to stay strong, motivated, and optimistic even in the face of difficult obstacles”. Watch the TED talk, learn about the research, read Jane’s guide to creating epic wins, and read the blog.
Local support
- Administration on Aging: Eldercare locator searchable by zip code, city and state, or topic.
- Aging Life Care Association: Find an Aging Life Care Professional.
- Alzheimer’s Association: Find a local support groups (scroll down) or call the 24/7 helpline at 800-272-3900.
- Family Caregiver Alliance (800-445-8106): State-by-state information on public, nonprofit, and private programs and services for people living in the community or in facilities. Headquarters are in the San Francisco Bay area, and they offer local support groups in English and Spanish, classes and events, as well as weekend retreats for people with dementia or other brain impairment.
- Huntington’s Disease Society of America: Find a support group.
- Hydrocephalus Association: Local support groups or call a peer volunteer.
- National Institute on Aging: Call the education and referral center Monday through Friday, 8:30 am to 5:00 pm Eastern Time at 800-438-4380 (English and Spanish). Or you can email them at adear@nia.nih.gov.
- Parkinson’s Foundation: Search database to find expert care and local support and services.
- U.S. Department of Veterans Affairs (VA;855-260-3274): Support programs for Veterans including adult day health care centers, home-based primary care, home hospice care, homemaker and home health aides, home telehealth, and skilled home care.
Research and clinical trials
- Alzheimer’s Association: Research they fund or participate in a clinical trial.
- Family Caregiver Alliance: List of surveys, studies, and clinical trials.
- Hydrocephalus Association: Research and participating in clinical trials.
- National Institute on Aging: Research, participating in clinical trials, and a searchable database of clinical trials.
- National Institutes of Health: Search database of more than 250,000 current and upcoming studies around the world.
- National Organization for Rare Disorders: Extensive list of current clinical trials and studies.
- Parkinson’s Foundation: Research they fund and participating in clinical trials.
- Trials Today: Search database of more than 20,000 current studies.
Resources for caregivers, family, and friends
- AARP’s family caregiving page: caregiving basics, home safety, meals, transportation, in-home assistance, health, financial and legal, and self-care for the caregiver. Videos and downloadable resources for wound care, mobility, medication management, and other topics.
- Aging Parents and Elder Care: First steps, checklists, and books.
- Alzheimer’s Association: Early-stage caregiving, middle-stage caregiving, late-stage caregiving, daily care tips, 10 ways to help a family living with Alzheimer’s (scroll down).
- Brain Injury Association of America: Personal stories.
- CaringBridge: Create a free, private, ad-free website seen only by people you invite. Keep your family and friends updated, coordinate assistance, and receive emotional support. You can also link your site to a fundraiser.
- Family Caregiver Alliance: Fact & tip sheets and articles on health issues, caregiver issues and strategies, statistics and demographics, caregiving resources, and legal resources (links all on same page). A separate page lists resources for caregiver issues and strategies, which include different resources from the first link.
- Huntington’s Disease Society of America: Long-term care and law enforcement education.
- Hydrocephalus Association: Resources for caregivers and additional caregiver resources.
- Mayo Clinic: Alzheimer’s or general. Adult day services, care tips, communication tips, elder care, end-of-life needs, family conflict, home care services, home safety, long-distance caregiving, marital strain, self-care, sharing the diagnosis with others, sleep problems, stress and yoga, sundowning basics and tips, wandering.
- National Council on Aging (NCOA): Resources including search more than 1,600 public and private benefits programs (health care, income assistance, food, housing, legal, transportation, etc).
- National Institute on Aging: Caregiving resources for Alzheimer’s disease, frontotemporal disorder, Lewy body dementia, as well as healthy physical activity, and healthy eating.
- National Organization for Rare Disorders: RareCare program provides financial support to qualified individuals. Resources for other financial support programs.
- Parkinson’s Foundation: Tips for dealing with dementia and where to look for help. Helpful tips at bottom of page for MCI and dementia. Extensive list of resources.
- Solutions for Seniors: Products for seniors and people with a disability.
- The U.S. Department of Veterans Affairs (VA): Caregiver information and tips for Alzheimer’s Disease, dementia, traumatic brain injury, understanding reversible dementias, searchable health library, downloadable tips and tools on managing medications, talking with your provider, caring for oneself, caring for finances, planning ahead for disasters, staying organized, and moving around safely. The publications page has downloadable resources on understanding diagnoses, managing demands, maintaining relationships, and free self-paced courses on a variety of topics. Participate in monthly call-in education groups. The caregivers of eligible veterans are entitled to up to 30 days of respite care per year.
Resources for people affected by dementia or related conditions
- Alzheimer’s Association: Extensive resources for people who have dementia.
- Brain Injury Association of America: Personal stories.
- CaringBridge: Create a free, private, ad-free website seen only by people you invite. Keep your family and friends updated, coordinate assistance, and receive emotional support. You can also link your site to a fundraiser.
- Huntington’s Disease Society of America: Living with HD, HDSA free telehealth, nutrition, long-term care, law enforcement education, personal stories, and work-out tips.
- Hydrocephalus Association: Resources for people affected by NPH.
- National Council on Aging (NCOA): Resources including search more than 1,600 public and private benefits programs (health care, income assistance, food, housing, legal, transportation, etc).
- Mayo Clinic: When to seek help.
- National Institute on Aging: Resources for Lewy body dementia, healthy physical activity and healthy eating.
- SuperBetter.com: Designed by Jane McGonigal, a game designer, to help herself get better after suffering severe side-effects from a traumatic brain injury. A game that increases your resilience, “your ability to stay strong, motivated, and optimistic even in the face of difficult obstacles”. Watch the TED talk, learn about the research, read Jane’s guide to creating epic wins, and read the blog.
- The U.S. Department of Veterans Affairs (VA): Blog post for veterans about dementia, searchable health library, and coping and living with traumatic brain injury.
Resources for professionals
- Alzheimer’s Association: Information for healthcare professionals (including “The Alzheimer’s Disease Pocketcard app“), first responders, public health officials, and other professional care providers, as well as information for researchers.
- National Council on Aging (NCOA): Resources for professionals and advocates.
- National Institute on Aging: Resources including assessment tools and patient/caregiver education and a series of educational brain images.
- Parkinson’s Foundation: Free courses for SLPs, OTs, PTs, and nurses and a toolkit for clinicians.
Watch and listen to learn
YouTube
- AARP: playlist of 21 videos titled “Caregivers who kick ass“.
- Aging Life Care Association channel.
- Alzheimer’s Association: channel.
- Alzheimer’s Reading Room: channel.
- Family Caregiver Alliance: channel.
- Hydrocephalus Association: channel.
- National Council on Aging: channel.
- National Institute on Aging: channel.
- Pines of Sarasota Education & Training Institute: channel.
- TED Talks: Many, search YouTube for your topic.
- U.S. Department of Veterans Affairs (VA): playlist on health issues.
Other video
- AARP and the Home Alone Alliance: Tips for family caregivers on wound care, mobility, and managing medications.
- Aging Life Care Association: live and recorded webinars.
- Alzheimer’s Association: Facts.
- Brain Injury Association of America: Recorded webinars (not free).
- Family Caregiver Alliance: Webinars (twice a month).
- Huntington’s Disease Society of America: Caregiver’s Corner videos on advocacy, care management, family issues, finance, juvenile onset, social issues, and research.
- Hydrocephalus Association: Webinars.
- Mayo Clinic: Alzheimer’s 101.
- National Institute on Aging: Brain changes.
- Parkinson’s Foundation: Videos about cognitive impairment and dementia. Webinar on dealing with dementia in PD and other cognitive-related topics.
- TED Talks: Search for your topic.
- U.S. Department of Veterans Affairs (VA): Videos about dementia and caregiving.
Podcasts or other audio
- Pines of Sarasota Education & Training Institute: Dementia Caregiver Talkshow.
- Parkinson’s Foundation: Substantial Matters podcast.
- U.S. Department of Veterans Affairs (VA): Recorded presentations (with transcripts) on a variety of topics, including self-care, family dynamics and relationships, communication, setting boundaries, and the LGBT experience.
- Wisconsin Alzheimer’s Disease Research Center: Dementia Matters presents interviews with experts “to keep you informed about the latest headlines, research studies, and caregiver resources”.
Tips for professionals
I don’t often direct patients or caregivers to this page, as I think it would be a bit overwhelming. But I use it as a starting point to select specific resources for my patients.
I find the resources that I think my patient (or caregiver) would find most useful. For those who use email, I simply email them the organization names and links. For my other patients, I quickly create a handout with the organization name, main web address, phone number, and a brief description of what it offers.
I’ve already found that the resource lists I’m giving to my families are more personalized to their specific needs. So far, they seem more interested and motivated to check them out.
Give it a try, and let me know if there are specific types of resources you’d like to be pulled into their own categories.
Lisa earned her M.A. in Speech-Language Pathology from the University of Maryland, College Park and her M.A. in Linguistics from the University of California, San Diego.
She participated in research studies with the National Institute on Deafness and other Communication Disorders (NIDCD) and the University of Maryland in the areas of aphasia, Parkinson’s Disease, epilepsy, and fluency disorders.
Lisa has been working as a medical speech-language pathologist since 2008. She has a strong passion for evidence-based assessment and therapy, having earned five ASHA Awards for Professional Participation in Continuing Education.
She launched EatSpeakThink.com in June 2018 to help other clinicians be more successful working in home health, as well as to provide strategies and resources to people living with problems eating, speaking, or thinking.
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