Congressional Profiles

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Support Dementia Caregivers by Protecting the Alzheimer's Grants for Respite

Over 300,000 Missourians are providing unpaid care to loved ones with Alzheimer’s or another form of dementia thus enabling a large portion of the 120,000 people living with dementia in Missouri to live in the community, instead of moving into more costly residential long-term care. In cases where finances are tight, Missouri’s state-funded respite assistance program steps in to provide funds for respite support or care-related products allowing the dementia family caregiver to take care of their personal medical issues, complete tasks outside of the home, or simply enjoy time off from the demands of caregiving. Without these funds, many caregivers risk worsening their own health. While the upcoming Fiscal Year 2022 budget will be tight, it is critical that legislators protect the full $450,00 in the budget for the Department of Health and Senior Services to provide grants for Alzheimer’s respite care.

Support Funding for the Missouri Structured Family Caregiver Program

In 2019, the Missouri enacted legislation establishing the Structured Family Caregiver Program to begin on July 1, 2020. The Program was to allow up to 300 Missouri HealthNet (Medicaid) beneficiaries, including those living with Alzheimer’s or other dementia, to live in their choice of home setting with the caregiver of their choice. This would improve access to home and community based-services, and support family caregivers of people with dementia by providing reimbursement for daily caregiving tasks. Due to the pandemic and the budget impact of COVID-19, however, funding was removed from the 2020 budget and implementation has been delayed. With the recent decision to expand Medicaid coverage and funding, the Alzheimer’s Association is urging state policymakers to advance funding in 2021 to provide critical, ongoing support to family caregivers of people with dementia.

Protect Residents In Long Term Care Settings by Mitigating the Risk of COVID-19 and Addressing Social Isolation

The COVID-19 pandemic is disproportionately affecting individuals with Alzheimer’s and other dementia, and is creating pressing challenges for long-term care (LTC) communities and residents, where people living with Alzheimer’s disease and other dementias represent a large proportion of LTC residents. There are also growing concerns that social isolation among people with dementia has contributed to individual decline and stress among family caregivers who cannot assess the health of their loved ones. To best support individuals living with Alzheimer’s and dementia during the pandemic, the Alzheimer’s Association has released a comprehensive set of long-term care policy recommendations for lawmakers focused on testing, reporting, surge activation, and providing support. The Alzheimer’s Association will continue to urge state policymakers to prioritize long-term care in the COVID-19 response.

Missouri State Plan Overview

In 2009, the Missouri General Assembly established the Missouri Alzheimer's State Plan Task Force through passage of HB 272. Tasked with assessing the challenges posed by Alzheimer's disease and related dementias within the state, the Task Force included representatives from state agencies, health care providers, and community organizations as well as caregivers, state legislators, an individual living with Alzheimer's, and the Lieutenant Governor. After collecting public input regarding community frustrations, concerns, and advice on dealing with this disease, the Task Force presented the Missouri Alzheimer's State Plan, published in November 2010.


Missouri State Advocacy Day

March 01, 2021

Join Alzheimer's advocates from around the state for Memory Week 2021. Our annual Memory Day will look a little different this year. This year we will meet with key legislators throughout the week utilizing virtual video chats. We will have a 90-minute program on Wednesday, March 3, where you will get to hear from key legislators, department directors, the Governor and Lt. Governor and maybe even a few surprises. We will get the opportunity to highlight the urgent need for funding of dementia programs and policy changes that will lead to transformative change. Wear purple and voice your support.

Sign Up to Learn More About Advocacy Opportunities in Missouri

Sign me up to participate in the upcoming State Advocacy Day!

State Affairs Contact Jerry Dowell | 573-489-4263 | [email protected]

Alzheimer's Facts and Figures in Missouri

Number of People Aged 65 and Older With Alzheimer's by Age

Year 65-74 75-84 85+ TOTAL
* Totals may not add due to rounding
2020 18,000 51,000 48,000 120,000
2025 21,000 61,000 51,000 130,000

Percentage change from 2020




Medicaid costs of caring for people with Alzheimer's (2020)


change in costs from 2020 to 2025



per capita Medicare spending on people with dementia (in 2019 dollars)

HOSPICE (2017)



of people in hospice have a primary diagnosis of dementia


of people in hospice with a primary diagnosis of dementia



Number of geriatricians in 2019


increase needed to meet Alzheimer's population needs in 2050

Hospitals (2017)



of emergency department visits per 1,000 people with dementia


dementia patient hospital readmission rate


increase in emergency deparment visits since 2007


319 Thousand

Number of Caregivers

363 Million

Total Hours of Unpaid Care

$4.76 Billion

Total Value of Unpaid Care

Number of Deaths from Alzheimer's Disease (2018)

2,641 total deaths in Missouri
6th leading cause of death in Missouri

For more information, view the 2020 Alzheimer's Disease Facts and Figures report at alz.org/facts.

U.S. Statistics

Over 5 million Americans are living with Alzheimer's, and as many as 13.8 million will have the disease in 2050. The cost of caring for those with Alzheimer's and other dementias is estimated to total $305 billion in 2020, increasing to $1.1 trillion (in today's dollars) by mid-century. Nearly 1 in 3 seniors who dies each year has Alzheimer's or another dementia.