Imagine knowing how long a loved one with dementia is going to live. Would you want to know? What would you do with that information, and how can it be helpful? Predictions from a prognosis prediction model were followed by the University of California, San Francisco (UCSF) for over a decade and may help clinicians accurately predict death among older adults with dementia and can be useful in many important ways.
The prognosis prediction model described measures such as an individual’s age, sex, body mass index, chronic conditions, smoking status, ability to walk several blocks, and ability to engage in vigorous activity. It also assesses the ability to perform activities of daily living, such as attending to personal care, eating, and getting in and out of bed, as well as instrumental activities of daily living such as meal preparation, grocery shopping, managing medications, and managing personal finances. The model proved accurate over a period of 10 years in approximately 75 percent of cases.
Knowledge of how long a loved one with dementia will live can be helpful in prompting conversations among clinicians and family members about treatment and end-of-life decisions, according to the researchers whose findings were published September 26, 2022, in JAMA Internal Medicine.
Study Shows Accuracy of Prognosis Prediction Model
In the study, W. James Deardorff, MD, a geriatrician at UCSF and the San Francisco VA Health Care System, and his colleagues at UCSF and the University of Michigan, Ann Arbor, followed for a 10-year period 4,267 men and women who were diagnosed with probable dementia.
The participants, whose average age was 82 and of whom 12 percent were African American and 69 percent were female, had been enrolled in the Health and Retirement Study, a nationally representative survey of adults over 50. The researchers validated their model with a separate group of individuals who were enrolled in the National Health and Aging Trends Study. As mentioned, their model predicted with 75 percent accuracy which participants with probable dementia would die within the decade ― considered to be long-term for this population.
What Can Be Done with an Accurate Mortality Prediction
Approximately 6.5 million Americans aged 65 years or older have Alzheimer’s disease or another form of dementia, according to the researchers. The median survival time from age at diagnosis varies widely, ranging from 3.3 to 11.7 years. The ability to better predict which patients are more likely to survive longer with dementia could significantly help with financial planning and estate planning, clinical choices, the need for long-term care, and other types of decisions for this population.
- With a better mortality prediction, clinicians can better frame discussions with patients and their families relating to end-of-life care, such as at-home support and nursing homes.
- With a better mortality prediction, physicians can better determine if the patients should continue with routine cancer screenings or discontinue medications, such as insulin for those with Type 2 diabetes. This is because for individuals with limited life expectancy, cancer screenings, such as colonoscopies, may cause harm without the individuals living long enough to experience any mortality benefit.
- With a better mortality prediction, individuals and their families can have more realistic conversations about what financial resources will likely be needed to support the individual with dementia.
In conjunction with the mortality prediction model, the researchers have designed an extremely helpful individualized mortality risk calculator for patients with dementia. They have also developed risk-versus-benefit screening calculators to help determine whether it is worth screening for colorectal cancer and/or breast cancer in patients diagnosed with dementia.
Model May Prompt Conversations about Financial Resources and Treatment Preferences
Roughly one-third of older adults with dementia who live outside of assisted living facilities live alone, according to the US Department of Health and Human Services. Another 30 percent live with others, and 27 percent live with a spouse or partner. Almost all people with Alzheimer’s or other forms of dementia need some type of long-term care services as the disease progresses. The mortality risk indicator will hopefully help patients and their families plan better for long-term care, preferably while the patients can still make health care and financial decisions for themselves.
In addition, according to Deardorff, “(e)ven if patients and caregivers do not wish to hear this information, the mortality risk estimates can still help clinicians make recommendations based on a patient’s previously shared goals and treatment preferences.” Clinician recommendations can be very helpful in decision making.
The researchers are now working on another prediction model to assess when an individual will likely become functionally and medically eligible to move into an assisted living facility and when an individual will likely become functionally and medically eligible to move into a nursing home. “Providing patients and families with an estimate of time to nursing home eligibility may help with future planning,” Deardorff said. This kind of prediction tool will be incredibly helpful for individuals who are considering using my Living Trust Plus® asset protection trust, whether through our law firm or through another law firm, to protect assets in advance of the need for a long-term care.
When a Loved One Needs More Care Than Can Be Provided at Home
This new prediction model and these new calculators can help determine when a loved one will need assisted living and/or nursing home care. With or without the help of such predictors, it’s important to know that when a loved one cannot live independently, and he or she is showing signs that living alone is a strain, it may be time to consider other alternatives.
If you can already see that nursing home care is likely going to be needed in the future, it is always wise to work with an experienced Elder Law Attorney such as myself. Life Care Planning and Medicaid Asset Protection is the process of protecting assets from having to be spent down in connection with entry into assisted living or nursing home care, while also helping ensure that you and/or your loved one gets the best possible care and maintains the highest possible quality of life. As always, please contact us at any time for an initial consultation:
Fairfax Elder Law Attorney: 703-691-1888
Fredericksburg Elder Law Attorney: 540-479-143
Rockville Elder Law Attorney: 301-519-8041
DC Elder Law Attorney: 202-587-2797
About Evan H Farr, CELA, CAP
