We recently explored the difference between Alzheimer’s and Dementia. But no conversation about dementia of any kind is complete without talking about the caregivers. Being an Alzheimer’s caregiver is hard. I’ve seen it in my own family, and there’s a good chance you have too, or you may yet. Here are some resources that the Alzheimer’s caregiver may find useful.
Caring for elderly Alzheimer’s patients can be extremely challenging. It gets more challenging as the disease progresses. Patients eventually reach a stage that requires constant monitoring and assistance with daily activities.
Several organizations provide useful tips, information on access to resources, and a caregiver support community where the caregivers can connect with other caregivers.
The Alzheimer’s Association provides support in-person and also digitally, via online message boards.
- In-person: While all in-person support groups have been converted to a phone or teleconference during the ongoing COVID-19 pandemic, the Alzheimer’s Association offers support groups that are led either by peers or professionals. These support groups may be personalized based on location. They may also be offered to children and adult caregivers. Specific information can be found via their Community Resource Finder or by contacting their round-the-clock helpline at 800-273-3900.
- Online community: ALZConnected is a free online community for Alzheimer’s patients, their caregivers, and family members to find support and to seek answers to their questions via a community-specific message board.
Additional programs and services for caregivers provided by the Alzheimer’s Association include:
- An online navigator program called Alzheimer’s Navigator that assesses needs of both the patient and their caregiver or those who make care decisions for the patient, and subsequently provides recommendations for the association’s services and programs.
- Community Resource Finder provides information on additional local resources such as adult day care, geriatric care managers, home care, hospice, and transportation.
- Information on clinical trials for Alzheimer’s can be accessed at Alzheimer’s Association Trial Match. This service helps connect Alzheimer’s patients and their caregivers with ongoing research studies across the nation. Information can be obtained by calling 800-272-3900 or by e-mailing TrialMatch@alz.org.
- Their Virtual Library includes databases and resources that house information on Alzheimer’s and other dementias.
The U.S. Administration on Aging has developed a website that provides a wealth of resources for both seniors and their caregivers. Caregiver Corner can help provide solutions for some common questions that you may face as a Alzheimer’s caregiver:
- Who can help me with transportation and in-home care?
- Can I get paid for caregiving?
- Does the VA provide in-home care?
- Where can I get low-cost legal assistance?
- What can I expect for my parent diagnosed with dementia?
- Where can I lodge a complaint about the quality of care at my friend’s or family member’s nursing home?
- As a caregiver, how do I work with my employer?
Alzheimer’s Foundation of America
The Alzheimer’s Foundation of America offers a toll-free helpline (866-232-8484) where caregivers can speak with licensed social workers trained in dementia care. The AFA also offers access to these social workers via Skype, chat, and email. Caregivers can access educational resources with information on the disease, fall prevention, ways to manage stress, working with a care team, etc. The foundation also offers informational webinars and other events with experts. Here is their calendar of events.
Home Care Services
This is a personal aide service provided by the National Institute on Aging. They provide connections to skilled medical care, to assist Alzheimer’s patients with bathing, dressing, errands, and transportation. The charges may be hourly or a flat rate—check with Medicare or the individual’s insurance provider on coverage. Some long-term care insurance plans may offer coverage for these services.
NIA Alzheimer’s and Related Dementias Education and Referral (ADEAR) Center
The National Association for HomeCare & Hospice provides a regional search tool that contains over 33,000 home care and hospice agencies.
“Home Health Care” versus “Home Care”:
Home health care provides a skilled nursing service in the home and may include:
- Physical and occupational therapy
- Administration of prescription medications or shots
- Medical tests
- Monitoring of health status
- Wound care
Home care is non-clinical care and may include:
- Companionship — reading aloud, chatting, and in-home activities
- Transportation to appointments
- Assistance with activities of daily living (ADLs) like dressing, bathing, and grooming
- Meal preparation or delivery
- Cleaning and organizing
- Help with bills or financial management
Home Health-Care Services
Medically trained licensed professionals can assist following an illness, injury, or hospital stay. Medicare or private health insurance can cover home health care services but these will likely require documentation from a medical provider.
Policies to Support Caregivers
- RAISE Family Caregivers Act: Signed into law in January 2018, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act has provisions to coordinate a national strategy to support family caregivers in the form of education, training, long-term services, and financial stability.
- Paid Family Leave: A survey commissioned by UsAgainstAlzheimer’s found that paid medical and family leave helped employees provide care for their loved ones with Alzheimer’s or dementia and had a positive impact on their personal health and emotional well-being. The FAMILY Act (S.463), introduced in the Senate in February 2019, includes provisions for paid family leave to care for seriously ill older relatives.
Additional Resources for Alzheimer’s caregivers
- Impact of paid family leave on caregivers: https://www.usagainstalzheimers.org/sites/default/files/2018-09/A_New_Frontier_In_Paid_Leave.pdf.
- Caregiving tips from the National Institutes of Health: https://www.nia.nih.gov/health/alzheimers/caregiving.
- Preparing an allied health professional to become Alzheimer’s caregiver: https://www.incrediblehealth.com/blog/dementia-alzheimers-caregiver-guide/
Patients Rising acknowledges the important contributions of Surabhi Dangi-Garimella, Ph.D. in this article. Improving patient access is our mission and we are happy to utilize a variety of experts to carry that out.