What Are Dementia Advocacy Groups?

Advocacy groups advocate for people with disabilities and those in specific communities who may benefit from advocacy or support. One such type of advocacy group is a dementia advocacy group, which offers this form of support to individuals with dementia. If you’re unsure what these groups do and how they might help you or a loved one, educating yourself on their impact and how to find support may be helpful. 

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What is dementia? 

Dementia is a set of symptoms that involve memory loss, trouble thinking, and difficulty performing daily activities caused by illnesses that involve symptoms of cognitive decline. According to the World Health Organization (WHO), over 55 million people have dementia worldwide. 

Currently, there is no cure for dementia. Dementia is a significant cause of death, and it costs economies 1.3 trillion dollars or more each year. Some dementia advocacy groups have been formed internationally to advocate for people with dementia and help them find effective, compassionate support systems. 

What is dementia advocacy?

Dementia advocacy is a group effort to improve the world for people with dementia, often led by organizations. Because this condition can take many forms, it may be difficult to describe succinctly. Dementia advocacy groups may work to encourage more effective and compassionate treatments for specific dementia patients. They may also argue for changes in public policy that could help people with dementia. Advocates may also push for more money to be dedicated to dementia research.

Alzheimer’s disease and dementia

Alzheimer's disease is the leading cause of dementia, and Alzheimer's advocacy is one form of dementia advocacy. Some dementia advocacy groups work on behalf of anyone living with dementia, while others focus specifically on people with Alzheimer's or another condition. These groups may base their work specifically on Alzheimer's research rather than on clinical trials focusing on dementia more broadly.

What do dementia advocacy groups do?

Dementia advocacy groups engage in a wide variety of advocacy activities with the aim of changing the world in ways that benefit people with dementia. Below are methods that they may use to provide support.  

Alzheimer’s disease and dementia

One long-standing form of health advocacy involves supporting research. With more research, experts may better understand dementia. A better understanding of dementia could ensure improved treatment options and knowledge about preventing the condition. 

Some advocacy groups support research by raising money directly. This money is then used to create grants that fund dementia-related research studies. Advocacy groups may also support dementia research through lobbying. For example, they may write letters, make phone calls, or lobby political representatives in person to argue that Alzheimer's and dementia research studies deserve higher funding. With enough funding, research studies and clinical trials can be conducted to test new ways to detect and prevent Alzheimer’s disease and other dementia symptoms.

Providing support via patient and caregiver support groups

Some dementia advocacy organizations directly support people with dementia and their caregivers. They often provide emotional support in the form of support groups, which may meet online or in person. 

Dementia advocacy organizations may also spread awareness and provide education about dementia to those seeking information. For example, they may create and share online resources, like blog posts and videos. They may also hold virtual events to help those new to dementia understand what to expect and identify what resources are available to them.

Changing public policy through dementia advocacy groups

Some dementia advocacy organizations, like the Alzheimer's Association, provide local resources through their community chapters. People wanting to get involved with advocacy often do so through their local chapter, by volunteering with fundraising, education, or other advocacy options.

Changing public policy

Some dementia advocacy groups aim to influence public policy. For example, they may support specific legislation that would benefit people with dementia in some way, such as by increasing research or healthcare funding. When trying to impact public policy, dementia advocacy organization members may directly contact or work with local, state, and federal elected officials. They may also mobilize their members to speak up or engage in activities to raise awareness and influence policy.

Improving healthcare

One specific form of policy change often sought by dementia advocacy groups is change impacting healthcare. For example, advocates may push for new dementia screening or treatment standards. 

Advocates may also coordinate among researchers, government officials, and healthcare professionals to ensure that the best standards in dementia treatment, according to research studies, are being implemented as a norm. These efforts may also impact what dementia-related tests and treatments are covered by Medicare, Medicaid, and health insurance companies.

In addition to supporting changes to healthcare policy, some dementia advocacy groups provide direct support to people with dementia in the form of patient advocacy. Patient advocates work on behalf of a specific patient to help them receive the best care. A patient advocate may ensure a patient understands their treatment options. Some patient advocates attend doctors' appointments with a patient or communicate with healthcare providers regarding the patient's medical bills and treatment options.

Reducing stigma and increasing awareness

Some dementia advocacy groups work to educate the broader public on dementia and reduce misconceptions. They may host events, sell merchandise, or publish blog posts and podcasts sharing information about dementia. 

Dementia awareness efforts often aim to educate people about the signs and symptoms of dementia so that when they encounter someone with dementia, they can better understand their situation and react with kindness and empathy. At times, dementia awareness involves sharing specific tips for interacting with people with dementia respectfully and healthily. 

Support options for people living with dementia

Although therapy cannot directly treat dementia, some people with dementia symptoms may find it helpful in managing mental health symptoms. However, in-person therapy can be inaccessible for those with mental and physical health challenges. In these cases, online therapy platforms like BetterHelp may be more convenient and accessible. 

Remote therapy for dementia

Remote therapy allows a person to receive treatment from home or anywhere with an internet connection. For this reason, a person with dementia may not be required to drive or find transportation to attend therapy. In addition, clients may choose between phone, video, or live chat sessions, giving them control over how they receive support. 

While remote therapy hasn’t been widely studied for dementia, research shows that general therapy for co-occurring conditions like depression may be effective in reducing co-occurring symptoms. In one study on internet-based therapy, researchers found that the intervention was more effective than in-person therapy in reducing symptoms of depression and anxiety and improving clients' quality of life. In addition, the therapy mode was more cost-effective.