Finding Cost Assistance for Alzheimer’s Patients and Caregivers

Receiving a diagnosis of Alzheimer's disease can be overwhelming, so it’s important to identify resources and support systems to help you and your loved ones navigate this challenging journey.

The progressive nature of Alzheimer’s and the high medical costs associated with long term care present a unique set of challenges for both patients and their caregivers emotionally and physically. Caregivers need to be prepared to encounter a range of cognitive and behavioral symptoms such as memory loss, confusion, aggression, wandering, agitation, as well as assist with activities of daily living such as dressing, feeding, bathing and bathroom assistance. Along with the behavioral changes, Alzheimer’s also poses significant financial strain on caregivers including out of pocket expenses for medical care, medications, home modifications, and long term care assistance.

In a study published by the Alzheimer’s Association, 70% of dementia caregivers say that coordinating care is stressful. Two-thirds of these caregivers have trouble finding resources and support for their needs. It goes without saying that discovering that you or a loved one has Alzheimer's disease can be a deeply emotional and uncertain moment. However, it's important to know that you're not alone in this journey.

There are resources and support systems available to help navigate the challenges that come with Alzheimer's disease, both in terms of managing its effects and finding financial assistance. Below, we've gathered some of the top resources you should consider for assistance and we’ve also highlighted low-cost and no-cost financial resources designed to help patients and or caregivers.

Alzheimer's Association: The Alzheimer's Association is a leading nonprofit organization dedicated to Alzheimer's care, support, and research. Their website (alz.org) offers a wealth of information, including educational materials, support groups, and a 24/7 helpline (1-800-272-3900) staffed by trained professionals who can provide support and guidance.

Alzheimer's Foundation of America (AFA): The AFA provides support, services, and education to individuals, families, and caregivers affected by Alzheimer's disease and related dementias. Their website (alzfdn.org) offers resources such as care planning assistance, educational webinars, and a national toll-free helpline (1-866-232-8484) staffed by licensed social workers.

Local Alzheimer's Support Groups: In addition to national organizations, it’s important to have a local support network. Local groups offer a safe space for patients and caregivers to share experiences, learn from others, and access valuable resources. You can find local support groups through the Alzheimer's Association or by contacting your local healthcare provider or local hospital.

Alzheimers.Gov – is a government sponsored website that links to Alzheimer’s and Dementia care local services.

ALZConnected is a free online community for everyone affected by Alzheimer’s or another dementia, including people with the disease and their caregivers, friends, family members and neighbors, as well as those who have lost someone to the disease. Members can post questions about dementia-related issues, offer support, and create public and private groups around specific topics.

National Task Group on Intellectual Disabilities and Dementia Practices – NTG’s is a not-for-profit organization who is focused on advocating for services and supports for people who are affected by Alzheimer’s disease and dementias.

Medicare and Medicaid: If you or your loved one has been diagnosed with Alzheimer's disease, it's important to understand your healthcare coverage options. 92% of Alzheimer’s Diagnosis are Medicare or Medicaid patients. Medicare, the federal health insurance program for people aged 65 and older, may cover some medical services related to Alzheimer's diagnosis and treatment. Additionally, Medicaid, a joint federal and state program, provides coverage for low-income individuals and families, including long-term care services for those with Alzheimer's disease. It’s anticipated that some of the new treatments coming into to the marketplace will be covered by Medicare.

National Plan to Address Alzheimer’s Disease is the bipartisan National Alzheimer’s Project Act (NAPA) and has, for over a decade, accelerated federal actions to optimize the quality of care for people living with dementia and their caregivers while advancing research towards a cure. The GUIDE Model will offer a standard approach to care, including 24/7 access to a support line, as well as caregiver training, education, and support services. This standard approach will allow people living with dementia to remain safely in their homes for longer by preventing or delaying nursing home placement and improve quality of life for both people living with dementia and their unpaid caregivers.  

National Council on Aging – NCOA is a nonprofit advocacy and service org that is focused on joining the efforts of government, businesses and nonprofit organizations to improve the lives of older adults.  

Lewy Body Dementia Association – Lewy Body Dementia is the second most common type of dementia. It is caused by a buildup of Lewy body proteins in the brain. People with Lewy body dementia have the motor symptoms of Parkinson’s but develop significant memory and / or thinking changes. Though Lewy body Dementia is separate from Alzheimer’s there are some similarities with services offered to both Alzheimer’s and Lew Body Dementia patients.

Financial Assistance Programs: There are several financial assistance programs available to individuals with Alzheimer's disease and their caregivers. These programs may help cover costs associated with medical care, prescription medications, home modifications, and respite care. Some options to explore include:

·      Social Security Disability Insurance (SSDI): SSDI provides financial assistance to individuals who are unable to work due to a disability, including Alzheimer's disease. 

·      Supplemental Security Income (SSI): SSI is a federal income supplement program that provides financial assistance to low-income individuals with disabilities, including Alzheimer's disease.

·      Veterans Affairs (VA) Benefits: Veterans and their spouses may be eligible for VA benefits, including disability compensation, pension benefits, and long-term care services.

·      Area Agencies on Aging (AAA): AAA organizations provide a range of services to older adults and caregivers, including information and referral services, caregiver support programs, and assistance with accessing community-based resources.

By accessing organizations like the Alzheimer's Association and Alzheimer's Foundation of America, exploring healthcare coverage options like Medicare and Medicaid, and tapping into financial assistance programs, you can better manage the challenges of Alzheimer's disease while ensuring that you and your loved ones receive the care and support you need. Remember, you're not alone—reach out for help and support whenever you need it.