Alzheimer's Advocacy in

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Addressing the Alzheimer’s crisis is as much a matter of public policy as scientific discovery, and we need your help to change the future of this devastating disease. As an advocate, you will be invited to engage public officials and policymakers in a variety of ways, urging their support for critical Alzheimer's legislation and policy changes.

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Current Action Alerts

Policies

Federal Policy

Alzheimer's is a devastating disease that cannot be ignored by federal policymakers. Our goal is to see that the federal government takes bold action now to confront this growing crisis. Urge your elected officials to enact public policies that provide better health and long-term coverage to ensure high-quality, cost-effective care for the millions of people who face this disease every day. Learn more

State Policy

Minnesota 2024 Policy Priorities

Invest in a Dementia Programs Manager 
Minnesota spends almost a billion dollars supporting people with Alzheimer's disease or another form dementia in Minnesota and there is no one agency responsible for coordinating these efforts and tracking outcomes. Minnesota should follow the lead of other states like Wisconsin and establish a permanent, full-time Dementia Programs Manager to work across state agencies and divisions to ensure the coordination of all Alzheimer’s programs and policies in Minnesota.

Minnesota Needs Leadership
Minnesota has a wide range of supports and services for the elderly and people with dementia. The Department of Health, Human Services, MN Board on Aging, Area Agencies on Aging, and local community-based organizations all play crucial roles in supporting Minnesotan's with dementia. Unfortunately these efforts are siloed and often uncoordinated. There is not a single state employee with 100% of their time devoted to Alzheimer's Disease. A dementia programs manager could help to fill this gap.

Track Outcomes
The lack of coordination also hinders the ability of a state to evaluate the effectiveness of policy efforts across the spectrum of programs serving those with dementia and their families. This in turn makes it more difficult for a state to keep its Alzheimer’s plan updated and relevant to the changing health care landscape.

Scope of Dementia Programs Manager

1. Oversee the implementation and update the State Alzheimer’s Disease Plan
2. Coordinate Alzheimer’s and dementia work groups and task forces
3. Establish and maintain relationships with all relevant state agencies and community organizations in order to meet community needs and prevent duplication of services
4. Evaluate existing Alzheimer’s and dementia programs and services
5. Identify service gaps within services offered by Minnesota
6. Increase awareness of and facilitate access to quality, coordinated care for people with dementia

Support Unpaid Caregivers
We must do more to support dementia caregivers and the $3.4 billion in unpaid care they offer every year. That’s why the Alzheimer’s Association supports expanding access to respite care services for dementia caregivers, including those who do not qualify for Medical Assistance, through targeted grant funding to respite care providers.

Caregiver Burnout
Unpaid or informal caregivers are the often forgotten backbone of Minnesota's Long Term Care System. Despite these life-changing contributions, there are very few public supports for caregivers until they have a medical or financial crisis and become eligible for Medical Assistance. This lack of support places tremendous strain on caregivers, leading to higher rates of depression and other chronic conditions. Caregiver burnout is also the leading cause for placing a loved one in an intensive and expensive setting like a nursing home.

Respite Care Makes a Difference
Alzheimer's Association advocates and community partners consistently identify the lack of affordable and accessible respite care as a top priority. A quick break with respite care allows caregivers to recharge their batteries, complete a chore like going to the laundry or buying groceries, or find the time for self-care or connecting with a friend. Expanding access to respite care will help seniors remain at home with their friends and loved ones.

Uneven Progress
Minnesota has appropriated one-time grant funding to expand access to respite care for older adults in the 2021 and 2023 state budgets, but has yet to make a long-term commitment to this essential service. The Alzheimer's Association urges policymakers to invest in base funding for respite care grants so that more people can have they support they need to continue caring for a loved one in their home.

Aging Affects Everyone
An aging Minnesota means that families will look different as well. We need to equip young Minnesotans with the tools to understand what healthy aging and dementia look like, as well as resources on how they can reduce their risk for developing dementia in the future.

Health Brain Initiative Road Map
The Centers for Disease Control and Prevention (CDC) and the Alzheimer's Association partnered to create the Healthy Brain Initiative Road Map with recommendations for state and federal policy makers on the public health response to Alzheimer's disease. This report found that structured classroom discussions with peers can help reduce the stigma around brain health. Regular, routine conversations about dementia can also better support the many children who are living with or have family members with Alzheimer’s disease.

Healthy Aging and Dementia Curriculum
Minnesota should create a voluntary health curriculum module on Healthy Aging and dementia for grades 6-12. This comes without a mandate and individual schools will have the option to use this curriculum. This would raise awareness about Alzheimer's disease and other dementias, equip young people with the tools to recognize the warning signs of dementia and how to better support their loved ones and provide information on how to reduce the risk of developing dementia. Please support Alzheimer's Association legislation to create this curriculum.

Download the 2024 MN Policy Priorities [PDF]

North Dakota 2024 Policy Priorities

State Dementia Coordinator and Advisory Council
North Dakota needs a dedicated position within the chronic conditions division of the Department of Health and Human Services (DHHS) to change the trajectory of Alzheimer's and dementia in the the state. There are currently 19,000 unpaid caregivers providing care to 15,000 people aged 65 and older who are living with Alzheimer's disease in North Dakota. A State Dementia Coordinator and Advisory Council are an integral part of a robust public health response to the increasing number of North Dakotans living with dementia.

State Demographics
The Behavioral Risk Factor Surveillance System (BRFSS) collected data on six risk factors for cognitive decline: Midlife Hypertension (age 45-64), Physical Inactivity, Midlife Obesity (age 45-64), Diabetes, Smoking (age 45 and older), and Poor Sleep (less than 6 hours per night). These risk factors increase the risk of cognitive decline and may also increase the risk of developing dementia. In North Dakota: 66.3 percent of people report having at least one of the five risk factors excluding sleep.

Potential Impacts
Medicaid currently spends $190 million annually on Alzheimer's care in the state. A position dedicated to coordinating the response to this as a public health issue is warranted when Medicaid costs for Alzheimer's care are projected to increase over thirteen percent by 2025. The addition of a State Dementia Coordinator will also result in a subject matter expert within DHHS who is capable of evaluating the effectiveness of existing and future policy efforts intended to serve North Dakotans living with dementia.

Implementation of State Plan
North Dakota invested in creating a robust Alzheimer's and Dementia State Plan, published in 2022, that has yet to be fully implemented. A State Dementia Coordinator, working with an Alzheimer's and Dementia Advisory Council, can develop a strategic work plan to fully implement the state plan. The state has also missed federal funding opportunities through the Building Our Largest Dementia (BOLD) Infrastructure Grant.
While there was support in DHHS to pursue the funds, there was no staff in the agency to take on the project.

Download the 2024 ND Policy Priorities [PDF]