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6 scary facts you should know about dementia care

Aging matters Documentary pic

Today’s dementia care partners, advocates and leading-edge experts fear that if we don’t take significant steps to create change, we’re going to face a massive care crisis in the near future. Families with members who live with dementia are already cracking at the seams. So are our healthcare systems. Here are six key things we need to think about (watch the excellent one-hour PBS documentary at the end of the post for more):

1 ) we will all be affected

Anyone can be affected by dementia, and eventually all of us will be touched by it in one way or another: either we will live with it ourselves, we will care for somebody who lives with it or we will know someone who lives with it or cares for someone who lives with it.

2 ) it’s very very expensive

Dementia care is expensive. In fact, dementia is the costliest condition in the United States, beating out cancer and heart disease. And most of the costs are not associated with healthcare, but with long term care. That means families usually bear the costs for caring for a loved one who lives with dementia. Many give up employment and deplete their savings to care for family members, which means they will be less able to care for themselves when the time comes.

3 ) systems are ill-equipped

Our healthcare systems and the medical professionals within them are, for the most part, ill-equipped to deal with people who live with dementia and to provide them with humane, dignified, and healthful care based on innovative care principles. Thousands upon thousands of elderly people with dementia are still physically and chemically restrained and warehoused in facilities where they wait to die. While there are exceptions, the vast majority of healthcare professionals don’t have the knowledge, skills, or the resources to provide state-of-the-art dementia care. That needs to change.

4 ) families are failing

Likewise, families of people diagnosed with dementia don’t know what they’re up against until it’s too late. They often become overwhelmed, exhausted, and frustrated because they simply don’t have the knowledge and/or skills required to care for someone who lives with dementia. Care partners live with depression and other serious illnesses and often die before those they care for. It’s a recipe for disaster.

5 ) a care crisis looms

Furthermore, experts agree the reliance on family caregivers is completely unsustainable. They say, for example, that the current ratio of caregivers available to provide care to somebody 80 years old and older in the United States is 7 to 1. Many care facilities are short-staffed as it is and the ratio is expected to drop to less than 3 to 1 by 2050. The situation is similar in other countries such as the Canada, the UK, and Australia. That means people now in their forties will face an acute shortage of people to care for them in their 70s and 80s.

6 ) we just don’t get it

Perhaps most frightening is how  deeply we misunderstand  and characterize the disease and the people who have it. For example, dementia care pioneer and expert Dr. Allen Power says: “Whether you are in your own home or a nursing home, we take people whose experiences are shifting and we put them in places based on our view of the world, our rhythms, our schedules, our staffing models, and we expect the people with changing brains to fit. If they can’t, we blame their dementia, and we give them antipsychotics medications.”

We need to approach dementia care in a whole new way. Our mindset must radically change. Our systems must be rebuilt. There are pockets of innovation, handfuls of care facilities that are doing things right (usually at prices beyond the reach of all but the wealthy), and strategies for moving forward. But they are not enough. This one-hour PBS Aging Matters documentary explores these issues in more depth; it includes interviews with people with dementia, researchers, authors, advocates and dementia experts such as Dr. Allen Power, and positive approach to care advocate and educator Teepa Snow among others. I highly recommend it.

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