Older adults with dementia in the United States face a myriad of pressing issues and challenges.

As the number of individuals afflicted with dementia rises, the demand for specialized medical care and support services escalates, putting immense strain on a healthcare system that is already stretched thin.

“The population in the U.S. is aging rapidly,” said Zhanlian Feng, a senior research analyst with RTI International who focuses on long-term care for older adults, including those living with dementia.

RTI is an independent, nonprofit research institute dedicated to improving the human condition.

The organization’s vision is to address the world’s most critical problems with science-based solutions in pursuit of a better future.

“Think about the absolute number of people affected by dementia,” Feng said. “The number of older people will explode in the coming decades.”

An estimated 6.7 million Americans aged 65 and older are living with Alzheimer’s disease today.

This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure the disease.

“This is really an immediate demographic imperative, focusing on dementia care across the country,” said Feng. “Caring for this vulnerable population will be a huge challenge.”

RTI has a strong record of supporting government agencies, communities and the aging network through research and technical assistance in the areas of integrated care, long-term services and supports, and home-based primary care for older adults with chronic diseases and debilitating conditions, such as dementia.

The vast impact of dementia

Dementia is a general term for changes in memory, thinking and other cognitive skills which can diminish a person’s daily functioning, social connectedness and ability to live independently.

“Dementia is typically considered to be a chronic condition, but it’s uniquely challenging unlike any other chronic condition,” Feng said.

It impacts not only the individual who has been diagnosed, but also their families, caregivers and communities.

Symptoms can take an emotional and financial toll on the person living with dementia and their caregivers as more supervision or round-the-clock care becomes necessary for an individual to live safely.

The large number of people with dementia combined with their high use of medical and long-term care services makes it a costly condition for individuals, families, Medicare and Medicaid.

According to the National Institutes of Health, healthcare and long-term services for people living with dementia were estimated to be $321 billion in 2022.

This year, the cost to families and others is estimated to be $340 billion.

Medicare and Medicaid spending is projected to reach $206 billion or 64% of the total cost of caring for people with dementia.

Medicare payments for beneficiaries with dementia are nearly three times as high as payments for those without dementia, and Medicaid payments are 22 times as high.

“People living with dementia don’t only have symptoms directly related to dementia, but they often have several other conditions that require complex medical care and supportive services,” Feng said.

Caring for ‘evolving needs’

For decades, both public and private-sector initiatives and investments have heavily focused on finding a cure for dementia—which remains elusive—instead of providing the appropriate care.

The Centers for Medicare & Medicaid Services recently announced the Guiding an Improved Dementia Experience (GUIDE) Model.

This is the first national care model focusing on a comprehensive, person-centered approach that encourages care coordination and gives families a “care navigator” who will provide continuity of care across providers and care settings to solve the disjointed care many individuals with dementia have historically received.

This approach recognizes and aims to address the evolving needs of individuals living with dementia as the disease progresses. It requires tailoring support to the individual’s specific cognitive, emotional, and physical needs.

“Most dementias progress slowly,” said Feng. “Family members take on more and more, sometimes without realizing how much they are doing on their own.”

The GUIDE Model looks to improve respite care as the aging population is expected to outpace the capability of the dementia specialist workforce.

“Policies should be designed to help caregivers and healthcare systems adapt,” Feng said.

It’s not all on the family

People living with dementia, caregivers and providers have access to a range of valuable resources to assist them in providing optimal care and support.

The GUIDE model promotes support to the individual and caregiver through an interdisciplinary care team.

Educational workshops and webinars offer practical knowledge and empower caregivers with effective tools.

Support groups, both local and online, create a safe space for sharing experiences, seeking advice and finding emotional support.

While many families view it as an obligation to take care of people living with dementia with little or no outside help, that is “no longer adequate,” Feng said.

“We have to think about policies that will support family caregivers and remove barriers to specialized care and services,” Feng said.

Government and nonprofit organizations provide informational websites, toolkits and access to local services and support networks.

Technology and mobile apps assist caregivers in managing daily tasks, medication schedules and communication with healthcare providers.

By utilizing such resources, dementia caregivers and providers can access a wealth of information, support and services that significantly enhance the quality of care provided to individuals living with dementia.

It has been the responsibility of the family to search for these scattered resources, which can be a challenge. The GUIDE model should enable easier access to trusted best practices through caregiver training, education, and respite support.

As the technical assistance provider to federal grantees, providers, and organizations through the National Alzheimer’s and Dementia Resource Center (NADRC), RTI produces and maintains a comprehensive library of resources that are practice oriented, such as webinars, toolkits, consumer guides, and other publications.

These resources can assist practices and programs, individuals, caregivers, and others in the health and long-term services system to improve and expand on person-centered care for people living with dementia.

“Every person living with dementia is different,” Feng explained. “So, there must be individualized care and planning, focused on the whole person.”

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