"My son, be steadfast in honoring your father; do not grieve him as long as he lives. Even if his mind fails, be considerate of him; do not revile him because you are in your prime." (Sirach 12-13).
Dementia stands out as a signature affliction of old age throughout human history. Defined as symptoms linked to loss of memory and thinking skills, dementia takes several forms, with 60-80% caused by Alzheimer's disease. Yet, it is not considered to be a part of normal aging.
Some moderate cognition changes are expected with age, but these do not lead to loss of independence. However, more serious cognitive decline can produce symptoms like rapid forgetting, navigation impairment, inability to solve everyday problems, or difficulty holding ordinary conversations.
Nevertheless, age is strongly correlated with dementia. One estimate shows only a 1.7% prevalence of dementia among those 65-69 years old. But with a doubling of new cases every five years, dementia incidence grows to over 50% by age 90.
Modern science has slowly uncovered the underlying causes of many types of dementia. Despite this, progress on finding effective treatment options has lagged. While deaths from conditions like HIV, stroke, and heart disease have decreased since 2000, deaths from Alzheimer's increased by 146%.
Ironically, increased dementia incidence can be viewed as a result of lengthening lifespans brought on by medical progress. In past generations, shorter life expectancy meant that people died of other causes before they reached an age when dementia was more likely. Today, however, barring the discovery of more effective treatments, increasing lifespans will result in more significant numbers of dementia cases.
The impact on society will be significant. Today in the U.S., about 6 million people over 65 are afflicted with Alzheimer's disease. Estimates point to a total of 13.6 million by 2050.
The Current State
Today, most people with dementia (81%) live in the community in a home or apartment. Another 6% live in residential care facilities like assisted living, and 13% live in nursing homes. Of those living in the community, almost two-thirds (60%) live with someone.
Informal (unpaid) caregivers provide a substantial portion of the care for people with dementia. In a 2011 survey of informal caregivers for those 65 years and over, 48% said they cared for someone with dementia.
In the same survey, three main reasons driving informal caregivers were:
- Want to keep person living with dementia at home 65%
- Want to be close to the person 48%
- Obligation felt to the person 38%
Informal caregiving, however, takes a considerable commitment of time, energy, and funds. In 2019, unpaid caregivers for people with dementia spent nearly an estimated 22 hours per week in this role. If their time were paid at $15.00 per hour, this would equate to over $17,000 per year. It is no wonder then that the total lifetime cost of care for someone with dementia was estimated at $357,297 in 2019 dollars, with 70% of this cost shouldered by informal caregivers, usually family.
This high cost is driven by the fact that those suffering from dementia require more healthcare resources. Comparing 2019 average Medicare costs, the figure for a person suffering from dementia was $50,201 annually versus $14,326 for a person without dementia.
In a 2017 University of Michigan poll, 62% of caregivers reported they considered caregiving both stressful and rewarding. Yet, the stresses were significant. About two-thirds (66%) said caregiving hampered their ability to take care of their own health, pay attention to their work, or have recreation time.
While at-home care by unpaid caregivers is the norm, the complex nature of dementia care results in less favorable outcomes compared to professional residential care. Studies have shown that those living at home ended up in the hospital more often than those living at home without dementia.
According to a study in 2010, of people with dementia who live in residential care settings like assisted living, 35% lived in facilities that had specialized cognitive impairment units. Another 7% lived in facilities that focused exclusively on dementia.
Over the past few decades, two trends have affected the facilities available for those requiring dementia care. First, skilled nursing facilities used to be the primary setting for care for dementia care outside the home. Now, residential care facilities like assisted living increasingly serve as viable options for people with this condition. Second, dedicated memory care facilities have grown in popularity over the same period. However, in recent years, the first trend seems to the stronger of the two. Construction funding appears to favor assisted living facilities that offer memory care as part of a continuum of care strategy that will be more likely to keep buildings full.
Given the projected growth of dementia, what must be done to adequately care for this burgeoning population?
- Total annual health care payments for people with dementia are projected to increase from $305 billion in 2020 to more than $1.1 trillion in 2050. This reflects almost four‐fold increases both in government spending (Medicare & Medicaid) and out‐of‐pocket spending. This increase could be blunted if progress is made on earlier diagnosis and therapies to slow the progression of dementia. An Alzheimer's Association study estimated that early detection and intervention could save nearly $7 trillion in medical and long‐term care costs for future Alzheimer's patients living in 2018.
- The increased prevalence of dementia will put growing stress on healthcare providers. Given current trends, there will be a worsening shortage of dementia care specialists. Pressure will also be on primary care providers as they see a rise in patients with dementia. Programs to increase the number of specialists and improve dementia knowledge among primary care providers will be essential.
- Another step will be to accelerate the development of collaborative and coordinated care programs. These programs delegate dementia care management to nurse practitioners, medical assistants, and social workers serving under a primary care physician's supervision. Existing programs based on such models have shown reductions in cost as well as fewer hospital/emergency room visits and nursing home placements.
- Increased build-out of assisted living facilities with memory care sub-units will help to meet the projected demand for dementia care. Improved staff training and close coordination with outside healthcare providers will also benefit residents with dementia.
- Informal caregivers will continue to provide the bulk of care into the foreseeable future. Programs to provide support for these caregivers can help in two ways. First, more flexible Medicare and Medicaid payments to provide better coverage for adult day care and in-home professional care will bring relief to informal caregivers. Second, programs for emotional and educational support for caregivers would reduce their stress while improving the quality of care they provide.