Editorial: Better dementia training can’t wait

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The Washington Post

The number of Americans over the age of 65 is rising quickly. In the past century, it has grown at nearly five times the rate of the rest of the population and is now approaching 60 million people. That includes about 15.5 million added since 2010. This is good news for the widening community of people who are enjoying happy, healthy golden years.

And yet, a rise in the number of older Americans also means a rise in the number of people with Alzheimer’s disease and other forms of dementia. More families are struggling with the challenge of caring for them. Recent years have brought a substantial increase in people with dementia residing in assisted-living homes. As a Post investigative series has revealed in appalling detail, these centers aren’t always equipped to provide the special care that people with dementia need.

To be sure, assisted-living centers were not created as homes for people with dementia or any other serious health problems. Back in the 1980s, when the assisted-living concept began, the expectation was that ill elderly went to nursing homes. Assisted-living centers were for older people who could manage independently, with staff nearby to help them with tasks such as taking medicines.

As the over-65 demographic has ballooned, however, the number of people experiencing dementia has risen, too — to about 7 million as of 2020. The figure could approach 12 million by 2040. Inevitably, people with dementia have become much more prevalent in assisted-living centers. About a third of assisted-living residents have dementia, according to the Alzheimer’s Association. Many are in memory-care units, but more and more can be found in the general assisted-living population. Some are just beginning to experience troubling symptoms. And, too often, assisted living cannot provide the special attention they need.

The Post reporters found many instances in which assisted-living staff members, often overworked and poorly paid, neglected patients, missed giving them their medicines, skipped scheduled bed checks or ignored alarms. Far worse, they found that in the past five years, some 2,000 residents had been able to walk away from assisted-living homes or were left unattended outdoors. Nearly 100 of them died — typically from exposure to extreme cold or heat.

This problem, which threatens to worsen, is already widespread enough to call for systemwide solutions. States should require minimum staff levels according to the patient population size, as the reporters noted. Only 13 states have such rules. (Unlike nursing homes, which are more largely funded by Medicare and Medicaid, assisted-living centers are not regulated by the federal government.)

More important, assisted-living staff need to be trained to understand dementia — including the disorientation, confusion and behavioral changes it causes — and to work compassionately with residents who have it. This means learning to communicate with them, and to observe them closely enough to recognize when they become bewildered or agitated — or decide to try to leave the building and set out on their own. Assisted-living staffers need to have enough education, and enough time, to patiently engage with residents and respectfully address their problems. When workers recognize symptoms of dementia and respond appropriately, it reduces stress for residents and caregivers alike.

Only half of states require such training for all assisted-living staffers, not just those working in designated memory-care units. And only nine states require at least six hours of instruction for all workers, the amount recommended by the Alzheimer’s Association, The Post reported.

States should mandate the use of training courses with proven effectiveness. They should require that assisted-living centers educate all their staff as well as possible to work with people who are diagnosed with or are just developing dementia. They should require that facilities document and report the training, as Oregon does.

The public and private sectors invest billions of dollars annually to understand dementia, to search for new methods of prevention and early diagnoses, and to discover pharmaceutical treatments. It is right to provide enormous resources for this work. But the search for a cure will yield results over the long term. In the here and now, there is great urgency to helping the millions already diagnosed with dementia thrive. Society should be equally devoted to ensuring that they get the care, protection and respect they need.