Caring for a loved one with dementia, for instance an aging parent, can be an emotionally draining experience. At times you may feel powerless, lonely, or like nobody understands what you’re going through. When this happens, reading educational articles, watching videos created to help caregivers, and getting in touch with people going through a similar experience can prove to be helpful. Fortunately, there are many excellent resources for when you feel like you need a little bit of help and support — and many of them are completely free to use.
1. ADEAR Center
As a public, U.S. Government-funded resource, the ADEAR Center strives to be a current, comprehensive, and unbiased source of information about Alzheimer’s disease and related dementias. All their information and materials about the search for causes, treatment, cures, and better diagnostic tools are carefully researched and thoroughly reviewed by NIA scientists and health communicators for accuracy and integrity. They have plenty of information to help you understand Alzheimer’s disease and related dementias. Read free publications here.
2. The Alzheimer’s Association
The Alzheimer’s Association is one of the foremost organizations dealing with the disease worldwide. Their website offers information and tools designed for both people with dementia and their caregivers. You can explore a variety of topics from the early signs of Alzheimer’s to treatment options, caregiver health, and more.
3. The Alzheimer’s Association’s Helpline
Whenever you feel like talking to someone, remember that the Alzheimer’s Association Helpline is available around the clock, 365 days a year — and it’s free. You can talk confidentially with master’s-level care consultants for decision-making support, crisis assistance, and education on issues families face every day. You can learn more about the symptoms of Alzheimer’s and other dementias, find out about local programs and services, get general information about legal, financial, and care decisions, and treatment options.
Note that some of the staff are bilingual, and there’s also a translation service, which accommodates more than 200 languages. You can reach them by dialing 711 or via the “live chat” green button on the website — the chat is available from 7am-7pm (CST) Monday-Friday.
4. Alzheimer’s Foundation of America
The AFA is a perfect place to go for caregiving resources. From fact sheets to free community classes, webinars, and more, you can find helpful material on the topic. The AFA also offers a National Memory Screening Program, which provides free, confidential memory screenings throughout the United States on an ongoing basis. Developed in collaboration with the AFA, the Brain Health Conversation Guide is a useful source for dementia caregivers to navigate difficult discussions about memory changes and cognitive health.
5. Caregiver Action Network (CAN)
CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge. They have online guides and a phone help desk of experts available seven days a week. The Caregiver Action Network’s Family Caregiver Toolbox is a go-to resource for information and useful tips on all aspects of caregiving. While it’s not specifically focused on dementia caregivers, there is an abundance of general information for caregivers, as well as videos on caregiver topics, including some specifically for dementia.
6. Dementia Friendly America
The DFA is “a national network of communities, organizations and individuals seeking to ensure that communities across the U.S. are equipped to support people living with dementia and their caregivers”. The website offers a lengthy list of resources for people living with dementia, their loved ones, and caregivers. Dementia friendly initiatives are also cropping up across various states and specific cities including many throughout Illinois so you can conduct an Internet search to see if your own community may be included in this list.
7. Family Caregiver Alliance
The Family Caregiver Alliance provides an abundance of resources for caregivers of people with a variety of health conditions and disabilities. The Dementia Caregiver Resources section includes helpful guides, tips sheets, and caregiver stories to help you navigate the journey of caring for a loved one with dementia.
8. Memory cafés
Memory Cafés are comfortable social gatherings that allow people experiencing memory loss to connect, socialize, and build new support networks. They are designed to include the care partner as well, for a shared experience. Search Memory Cafés in Illinois here.
9. Memory People Facebook Group
With 24,500 members and counting, this Facebook group was created by a person with early-onset Alzheimer’s. Among the members you’ll find patients, caregivers, family members, and dementia care professionals. The group characterizes itself as “a safe, comfortable place to find real-time support for those touched by dementia-related diseases.” Note that this is not the place to find professional advice but rather comfort, advice, and understanding.
10. Support groups
Sometimes talking to others who are going through a similar experience can be useful and helpful. They are likely to understand your feelings and worries and you can even exchange advice on specific caregiving situations. If you’d like to join an in-person group in your local area, you can search the database of the Alzheimer’s Association.
If you prefer online interactions or cannot attend regular in-person meetings, you can try accessing online support communities. CAN’s Care Community is an online support community with several forums including a group for Alzheimer’s caregivers, a forum for caregivers coping with depression, a group for caregivers to discuss tips and strategies for dealing with healthcare providers, and more.
Created by the Alzheimer’s Association, ALZConnected helps caregivers remember they aren’t alone. The site is home to forums for adults with Alzheimer’s or other types of dementia and their family caregivers. The Family Caregiver Alliance also offers online support groups for caregivers to connect with others who are facing similar struggles and those who can offer advice for overcoming common caregiving challenges.
11. VA Caregiver Support
Run by the U.S. Department of Veterans Affairs, the National Caregiver Support Line is open for veterans and those who care for them six days a week. You can call to find out more about care options, find a professional to help you or your loved one, or to talk about your experience. This service is not specific to dementia but can provide support for those affected by this disease as well.
If you’re caring for a loved one with dementia and you’d like to discuss your current situation, challenges, and concerns, schedule a free 30-minute session with our Expert on Memory Care.