According to the World Health Organization, the number of people living with dementia worldwide could reach 78 million in the next eight years. On average, people with dementia live five to 10 years after diagnosis. They will need medical, neuropsychological, and social services throughout their care journey. But unfortunately, in much of the world, people living with dementia and their caregivers do not receive high-quality, coordinated, comprehensive care. The Milken Institute and Alzheimer’s Society has released a roadmap to address this urgent need.
People living with dementia navigate a long journey filled with health crises, loss of choice and control, and financial distress. While many statistics document the adverse health outcomes related to a lack of integrated care and supportive services, behind these numbers are individual people with dementia and their families, living with the reality of this day by day. Most investment and attention to Alzheimer’s has focused on developing pharmaceuticals to cure or slow the disease. These disease-modifying therapies show promise, but in pursuing a cure, we cannot ignore the millions of people affected today. Unfortunately, current investment in care interventions and research has been woefully inadequate. The Milken Institute and Alzheimer’s Society are deeply committed to more significant investment to ensure people can manage dementia and live better.
While political leaders have significantly increased the amount dedicated to Alzheimer’s disease and related dementias, most of it is devoted to research on disease-modifying therapies. For example, of the U.S.’s $10.8 billion in dementia research funds, less than 4% was pegged to care research. In March, U.S. congressional leaders announced a $289 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH) for the fiscal year 2022. However, it’s unclear what percentage of these dollars will be committed to care research. Similarly, President Biden’s newly released FY 23 Budget proposes a significant investment of $5 billion for Advanced Research Projects Agency for Health (ARPA-H), with an initial focus on cancer and other diseases such as diabetes and dementia. In England, the UK government announced a major investment in social care earlier this year to cap the amount all citizens pay toward their social care during their lifetime. But research by Alzheimer’s Society finds that up to 80% of people living with dementia would not benefit from the government’s proposed £86,000 social care cap, as proposed protections for the less wealthy have been scrapped.
It’s positive to see the National Institute for Health Research in the UK has recognized the need to put social care research front and center, renaming itself the National Institute for Health and Care Research and announcing an extra £5m a year dedicated to social care research and studies on transforming care at home. While this is a good step forward, we need to see much more recognition of the importance of, and investment in, care research across the board.
Our roadmap offers five opportunity areas where we believe government, philanthropic, and private capital can dramatically improve the quality of life for people living with dementia and their caregivers. While predominantly focused on opportunities in the UK and U.S., this roadmap can be applied to many countries with secure and sophisticated economies. They include:
1. Bolstering efforts to build the evidence base for care practices
2. Supporting timely and accurate diagnosis
3. Increasing clinical trial recruitment and support
4. Building system and workforce capacity
5. Integrating technology in the care continuum
There is an urgent need to build the evidence base to support people to live well with dementia, from identifying metrics that capture the impact of care interventions to supporting studies on the ideal staffing mix for specific care models to translating research into clinical practice. Research should test technology in the homes of people living with dementia to create intelligent environments that can help predict when problems will arise. Research should explore better treatments for symptom management for agitation, delirium, and sleep disturbances. Defining best practices can ensure that each person with dementia has greater choice and control over a personalized combination of treatments, comprehensive care, and supportive services to help them live meaningful lives after diagnosis. The interplay with other age-related conditions is evident, and the heterogeneity of the condition and its symptoms require funding for multidisciplinary research.
Experts worldwide agree that a timely and accurate diagnosis of dementia can provide individuals and their families with the time needed to create a plan that enables them to live their lives to the fullest. Also, the most promising disease-modifying therapies in the pipeline are intended for patients in the early stages of the disease, making early diagnosis more critical than ever. Unfortunately, dementia diagnosis rates in the UK plummeted during the COVID-19 pandemic. As a result, many people are going without the support, treatments, and opportunities for research that may help. Investment and global collaboration are vital to validate, test, and increase access to the best tools to detect and diagnose dementia.
For decades, clinical trials have been used as the primary way researchers determine if a new treatment is safe and effective for human use. The COVID-19 pandemic brought issues of inequity into starker focus, as historically underserved communities suffered disproportionately. Currently, 90% of genetic analysis has been conducted on Western European legacy white populations, while 90% of the world’s population is not of this demographic. To achieve health equity, multi-stakeholders must come together to create a concrete action plan with a clear vision. The need to continue clinical trials during the pandemic resulted in researchers re-imagining their study designs to accommodate remote data collection and review. A shift to virtual trials could encourage more low-income, rural, and underrepresented populations to enroll in dementia trials.
In our roadmap, we share creative ways to bolster workforce capacity by training all health professionals and paraprofessionals to meet the growing demand for care. We also suggest opportunities to integrate technology into the care continuum. These elements are essential, and care can’t wait for a cure. Please join us in this global collective effort to ensure that the people living with dementia and their caregivers receive every opportunity to live well.
For more information, please refer to the Milken Institute and Alzheimer’s Society Roadmap for Investment in Dementia Care.