While there are resources for those with dementia, it can be daunting to access them. Many places have had to go online or virtual for their care consultations and often in person meetings are unavailable. This can certainly create issues for those without internet access or ability to navigate complex websites. Below I’ll share a few options that I have had experience with and have found very helpful.
The first person to ask is your physician who often has a list of resources to give you. If you have a neurologist (which you should, in my opinion) make sure to ask for resources from them as well. They should be able to provide you in office counseling that may be covered under your insurance or at least be able to refer you to someone or an organization to help you.
Additionally, check your local Alzheimer’s Association. I worked there for four years, but before that, I didn’t even know there was such a thing. I did not live under a rock by any means, but just had not heard of the Alzheimer’s Association by name. They consult for all types of dementia, not just Alzheimer’s disease. Their trained staff can get you started on your journey of discovery of what to do and what to expect if you or a loved one is diagnosed. They have local offices in some major cities, but local offices in smaller, more rural communities are not as common. This doesn’t mean they don’t service smaller communities, it just may mean the coverage is scheduled on a certain day of the week or month in your area. The good news is that the Alzheimer’s Association is just a phone call away and hosts an extensive website full of good information. I used to say that the website is a treasure trove of information and it is! You can also access information online at https://alz.org or call the 24/7 helpline at 800-272-3900. The helpline can give you local resources, lists of physicians, neurologists, and caregiver groups in your area. Early stage groups also meet to talk about their experiences and this can be very comforting. I recommend talking to others going through the same challenges as it does provide an outlet for both the person with dementia and their caregiver(s).
For researching specific topics, visit the Virtual Library on the alz.org website. There you can find resource lists, search databases, download publications and access their favorite links to educate yourself. I find it difficult to locate from the main website so here is the link: https://www.alz.org/help-support/resources/virtual_library
In Ohio, we have Area Agencies on Aging (also referred to as the Triple A’s) or they are sometimes call the Area Offices on Aging. Other states’ offices can be found on http://eldercare.acl.gov or by calling 800-677-1116 to find help in your community. These agencies are managed at the state level and receive grants and funding from the government for programs and assistance for anyone in need. These agencies can help a great deal and also offer caregiver groups, help with Medicaid and Medicare questions and connect you to free or low cost services for your needs.
The National Institute on Aging and the Centers for Disease Control and Prevention also contain helpful links to research, data and statistics for those seeking information. Both of these websites are funded by the U.S Government and contain the most up to date data collected by their agencies. The NIA’s website is https://nia.nih.gov and the CDC’s website is https://cdc.gov. Search for general dementia or your specific type of dementia in the search bar to access the information and also to find references and other resources.
There are so many places to seek information online and here are a few more that have been helpful to me:
- Dementia Friends USA – https://dementiafriendsusa.org
- Dementia Friends UK – https://dementiafriends.org/uk
- Positive Approach to Care/Teepa Snow – https://teepasnow.com
- Alzheimer’s Society – https://alzheimers.org.uk
Good luck in your search for answers and information. I always find that if we know what we are dealing with we can accept it and make the best choices for us. I certainly hope you will do your research and ask questions. I highly recommend support groups. Support groups change lives. I recommend joining or starting a support group early on in your journey since there is always more to learn from real people living through this.
Email me anytime at firstname.lastname@example.org. Thanks for reading. Peace.