The Alzheimer’s Association recently released its 2015 Alzheimer’s Disease Facts and Figures report and while the report doesn’t offer promise of when a cure would be delivered, it does depict what families and friends face when caring for a loved one with Alzheimer’s or dementia. Most importantly, it also highlights what the United States is currently facing and will face in the coming years as more seniors are diagnosed with this disease. The report notes that “not only is Alzheimer’s disease responsible for the deaths of more and more Americans, the disease is also contributing to more and more cases of poor health and disability in the United States”(page 29).
Cases and Mortality
Though the estimated number of the adults 65 and older with Alzheimer’s disease in 2025 and 2050 did not change from the 2014 Alzheimer’s Disease Facts and Figures report, this is a small comfort as the numbers are expected to be 7.1 and 13.8 million, respectively, unless medical advances deliver a cure or prevention(22).
Between the two reports, the estimated lifetime risk for Alzheimer’s, based upon the Framingham Study, saw mixed news: men saw their lifetime risk decrease across all age classes while women saw an increase at the age of 75 and older.
Estimates place California, Florida, New York, Texas and Pennsylvania as the top five states with the highest number of cases of Alzheimer’s among adults 65 and older. The states with the fewest cases of adults with this disease are Alaska, Wyoming, District of Columbia, Vermont, and North Dakota.
The deaths from Alzheimer’s disease have “increased significantly” the report found, with an increase of 71 percent between 2000 and 2013. The current total of annual mortality rate due to Alzheimer’s disease for 2013 is 27 deaths per 100,000 people(26).
A Picture of Caregiving
17.7 billion hours of unpaid care were provided to friends and family with Alzheimer’s disease and other dementias in 2013; this number increased to nearly 18 billion in 2014. Though it is expected that older adults require assistance with activities of daily living, which include dressing, bathing or getting in and out of bed, adults with Alzheimer’s or dementia require more assistance with these activities compared to other older people(33). Of the states with the highest hours of unpaid care—California, Texas, Florida, New York and Pennsylvania—were the top five.
And this caregiving takes an emotional and physical toll: 59 percent of caregivers reported high to very high emotional stress of caregiving but on the physical side, only 38 percent reported it as high to very high(38).
Costs of Alzheimer’s and dementia
$226 billion is the estimated costs of health care, long-term care and hospice in 2015 for people with Alzheimer’s disease or dementias. Of this cost, Medicare foots the bill for half of these costs, followed by out of pocket and Medicaid (45). The average per-person payments were highest for adults living in nursing homes or assisted living communities compared to living in the community (45). The report projects that the cost of care will increase to more than $1 trillion (in 2015 dollars) in 2050(56).
Are people being told of their diagnosis?
The 2015 Alzheimer’s Disease Facts and Figures report also included a special report on Disclosing a Diagnosis of Alzheimer’s Disease. Studies have found that fewer than 50 percent of adults are being told they have Alzheimer’s or dementia. This is in sharp contrast to other medical conditions that are disclosed at substantially higher rates: breast cancer (96 percent), prostate cancer (92 percent) and Parkinson’s disease (72 percent)(61). It was also found that health care providers are more likely to disclose the diagnosis to the caregiver.
Of the reasons for why the diagnosis is not shared—diagnostic uncertainty, time constraints and fear of causing emotional distress, patient or caregiver wishes and lack of disease-modifying treatment and stigma—are the common reasons. Fear of causing emotional distress is the most common reason cited for not disclosing the diagnosis. Yet studies reveal clear benefits of disclosing a diagnosis of Alzheimer’s or dementia both promptly and clearly, including better decision-making, planning for the future and understanding the changes they have been experiencing.
Given that the number of cases of Alzheimer’s disease will only increase in the coming years, more families will, unfortunately, find themselves dealing with this very situation and becoming a statistic. With an ongoing commitment to research and education, the hope is that better diagnostic and treatment options will one day make it possible to slow or even stop the disease process in its tracks, enabling patients to live longer, healthier lives without the devastating effects of Alzheimer’s disease.