Caregiver Mental Health: Dementia And Alzheimer's Resources For Caregivers

Many people providing care for people with Alzheimer’s disease are not professional caregivers or healthcare workers. Instead, they’re often spouses, children, parents, or friends trying to ensure their loved one retains as much well-being as possible despite living with this challenging, degenerative condition. As a rule, they can use all the help they can get—but they may not know what help is available or how to find it. 

If you know where to look, you can find diverse support options as a caregiver for someone with Alzheimer’s disease. Many nonprofit organizations share free education and wellness resources to help you stay on top of your responsibilities and your own mental health. Some government agencies offer similar materials as well as more direct support in the form of financial aid to help with the costs of care. Additionally, peer support groups are available to help provide a sense of community support from fellow caregivers. 

Key challenges Dementia and Alzheimer's caregivers may face

Caring for someone with Alzheimer’s disease or related dementias can be physically, emotionally, and financially exhausting. This is especially true considering that most caregivers in the US are informal caregivers like family members, so they may not have the training or experience to manage these challenges like a professional might. As such, they tend to encounter challenges like:

• High stress levels
• Lack of sleep
• Trouble paying for care
• Reduced income due to less time available for work
• Depression
• Anxiety
• Strained relationships with the person(s) receiving care
• Poor health

In addition to trying to learn how to manage care for an adult with increasing cognitive decline, caregivers may also be working through complex emotions related to watching their loved one experience these difficult symptoms. It can be painful to see a parent, sibling, spouse, or other family member slowly lose their memory of themselves and their ability to function in daily life. 

In addition, people with Alzheimer’s disease often seem to undergo a fundamental shift in their personalities, becoming irritable, fearful, or paranoid. It may get progressively more challenging to connect your happy memories of your loved one with the person you’re providing with everyday Alzheimer’s care. You may find yourself getting impatient or resentful, which can then trigger feelings of guilt. If you find yourself experiencing any of these challenges, you may wonder how to manage. Below are some organizations and programs that can offer support.

Resources for Alzheimer’s caregivers

If you’re looking for information and resources, you may consider learning more about these. Some are Alzheimer’s-specific, while others are intended for caregivers and family members of those with chronic illnesses in general.

Alzheimer's Association for free educational Alzheimer's resources for caregivers 

This nonprofit group offers a wealth of free educational resources. On their website, you can find articles about everyday care practices, tips for caregiver health, and suggestions on nurturing brain health in older adulthood, among many other topics. They also host local educational events with expert speakers as well as support groups in various places.

In-depth information on Alzheimer’s like you can find from this organization can greatly help when caring for family members with cognitive decline. Many caregivers find that a lack of knowledge about the progression of this disease and how to respond to various symptoms is one of the biggest hurdles in their care process, often worsening the stress and frustration this condition can cause. 

The Association can also provide a sense of community, as they offer peer support groups for caregivers and social engagement programs for people with early-stage Alzheimer’s disease. Plus, if you’re feeling lost or overwhelmed, you can speak with understanding, masters-level specialists and clinicians at the Alzheimer’s Association’s 24/7 Helpline.

Alzheimer's Foundation of America (AFA) for Alzheimer's disease and dementia caregivers

The AFA is another rich source of education and community support for anyone providing Alzheimer’s care. Like the Alzheimer’s Association, this nationwide nonprofit organizes support groups and operates a toll-free helpline for caregivers. Their programs are typically staffed by trained social workers experienced in assisting with dementia care.

They also publish articles and hold online webinars sharing valuable information about living with and treating Alzheimer’s. In addition, their online Teal Room program provides virtual therapeutic classes on activities like music, dance, fitness, art, and gardening, which may help a person with dementia stay mentally active. The AFA can also give virtual tours and online plans for a prototype Alzheimer’s-friendly apartment to assist you in setting up a safe, welcoming space for a friend or family member with dementia.

Caregiver Action Network (CAN) for mental health and support

With their comprehensive “Family Caregiver Toolbox,” CAN offers support in many forms to those caring for a family member with any chronic or terminal condition, including Alzheimer’s. The toolbox includes things like checklists for doctor visits, tips on managing the cost of care, and advice on supervising medication regimes. 

They also have a Facebook group where people caring for family members can connect to share information and advice, which may help alleviate the loneliness that commonly affects long-term caregivers. Similarly, their website has a place where individuals can share their personal stories for the same reason—to provide a sense of solidarity and support.

Family Caregiver Alliance (FCA)

Founded to support family members who provide care for adults with all types of cognitive conditions, the FCA provides articles and videos discussing the ins and outs of Alzheimer’s care. Along with suggestions on supporting a family member with cognitive decline, the group also provides self-care resources to help individuals manage caregiver stress.

Finally, the FCA’s Services by State tool can help you identify local resources, from government benefits to facilities for Alzheimer’s community living. If you live in the San Francisco Bay Area, you can also visit the group’s Caregiver Resource Center for in-person support.

Government resources in addition to Alzheimer’s resources for caregivers

The federal government (along with some state governments) also provides programs designed to assist individuals who’ve taken on the responsibility of Alzheimer’s care without professional training. Below are a few notable examples.

Eldercare Locator for people with Alziheimer’s disease

No matter how much you might wish to support your friend or family member on your own, a person with Alzheimer’s often requires more assistance than just one person can provide. The Eldercare Locator, a service operated by the US Administration for Community Living, can help you find assistance in your area. Whether you need occasional help with transportation or support finding a long-term care facility, this searchable database can help you locate services near you.

National Institute on Aging (NIA) for long term care

A subdivision of the National Institutes of Health, the NIA focuses on ways to promote health and well-being in older adulthood. Among other things, this can involve offering various types of assistance to people with Alzheimer’s and those caring for them. Their website provides information on everything from understanding the symptoms of Alzheimer’s to preparing advance directives for loved ones. 

Various financial assistance programs as means of caregiver support

Some government agencies provide direct monetary support for caregivers experiencing financial challenges. Since many people caring for people with Alzheimer’s report challenges with paying for care at times, this type of assistance can be a lifeline. 

Some notable programs to look into for potential financial support include:

• Medicare.Alzheimer’s most commonly affects individuals over 65, which means that Medicare—the health insurance program the federal government offers people past retirement age—is often a part of paying for care. It’s reported that Medicare typically covers some, though not all, of the costs of Alzheimer’s care. 
• Medicaid.People in low-income households who are managing care for a person with Alzheimer’s may also qualify for assistance with healthcare costs through Medicaid.
• PACE.The Program of All-Inclusive Care for the Elderly (PACE)—which is offered in certain states and applies to certain, eligible individuals—can help some older adults meet their care needs while living in their homes rather than moving into care facilities. 
• Social Security programs. Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) may help pay for care and living expenses if the person you’re caring for is disabled due to their condition.
• Resources through the Department of Veterans Affairs.Former military members with Alzheimer’s disease may be able to receive coverage for long-term care through the United States Department of Veterans Affairs.

The Alzheimer’s Association also has a tool that can help you search for more financial resources for which you and your loved one may be eligible.

Mental health resources for Alzheimer's caregivers

Seeking out online resources, support groups, and financial aid programs can all be valuable as an Alzheimer’s caregiver. Still, given the challenges of this role, you may find that you need additional, personalized emotional support in order to maintain your mental health and continue to provide care. Given the prevalence of anxiety and depression among those caring for family members with various types of dementia, getting support from a therapist is widely recommended for individuals in this role. A trained therapist can offer you a safe space to express your frustrations or concerns and provide strategies for coping with emotional challenges in a healthy way. If you’re experiencing symptoms of a mental health condition, they can help address these as well.

Efficacy of online therapy for the health care of caregivers

If you’re feeling stressed or overwhelmed by the demands of daily caregiving, you might consider online therapy in particular as a more convenient option for seeking support. The ability to attend sessions from your home or somewhere else with an internet connection rather than having to commute to an office can make it much easier to make time for counseling. 

Many studies have indicated evidence of online therapy’s effectiveness in addressing various mental health conditions and challenges. There is also emerging evidence that it can be helpful for Alzheimer’s caregivers in particular. For example, one study published in 2021 suggests that online cognitive behavioral therapy (iCBT) may be effective in “reducing caregiver burden, anxiety, depression, and stress, and improving quality of life” for informal caregivers specifically.