6 scary facts you should know about dementia care

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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 significant care crisis in the very near future. Families with members who live with dementia are already cracking at the seams, as 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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8 Comments

  1. IN simple words – the so called impending crisis in the world of Dementia has been experienced for more than 7 years. MY husband suffered the indignity of 106 carers During the last year of his life – 12 May 2012. While some brilliant work has been done, and is in progress this very real problem of the shortage of care workers is still not being addressed. No-one knows the PWD better than the family carer, due to the knowledge and experience gained. You cannot put a price on this, but it can be shared by other disciplines involved. SO ‘powers that be’ LISTEN TO HEAR, INCLUDE FAMILY CARERS from the outset of any Discussion and Planning, make sure the correct attitude and training is in place at all times. All involved in the care of PWD should do jwith Respect.

    • RE “No-one knows the PWD better than the family carer, due to the knowledge and experience gained. You cannot put a price on this, but it can be shared by other disciplines involved. SO ‘powers that be’ LISTEN TO HEAR, INCLUDE FAMILY CARERS from the outset of any Discussion and Planning, make sure the correct attitude and training is in place at all times. All involved in the care of PWD should do with Respect.”

      I couldn’t agree with you more. Too often medical people think they have all the answers, when really they don’t.

  2. Jennifer Dittemore on

    Antipsychotic meds aren’t necessarily a bad thing. My mother went from being very unhappy and lashing out to be a sweet happier person. It was sad to me that she had not received them 15-20 years earlier before she destroyed all the relationships with those around her. Maybe others like her have not only dementia, but other psychological issues as well. Certainly it is a case by case issue. Dementia is not one thing, but multiple causes complicated by additional mental problems.

    • Jennifer, thanks for your comment. Antipsychotic medication is meant for people who have psychosis. Unless a person is diagnosed with psychosis she or her should not be given antipsychotic medication. If your mother was psychotic, and diagnosed as such, then she may have been prescribed antipsychotic medications appropriately. And if she had been psychotic all along, before she began living with dementia, then you’re right, perhaps she should have been prescribed antipsychotic medications long before she had dementia.

      Medication is not inherently good or bad. It’s the inappropriate use of medication that can be damaging. for example, some people say it’s a good thing to have the occasional glass of red wine, or even a daily glass of red wine. But drinking several bottles of wine a day is definitely not a good thing.

      Further, many physicians are not properly informed and/or led to believe by pharmaceutical companies that prescribing certain drugs to their patients will be helpful when in actual fact it’s not. We are learning this to be the case with opioids for example; see more about that here: http://www.rxreform.org/prescription-opioids/similarities-to-heroin/

      While antipsychotics may have been a good solution for your mother, they devastated the well being and quality of life of my care partner. And I’ve seen the tragic impact they’ve had on others as well. A growing body of research shows that antipsychotics are ineffective in treating behavioural issues that are ascribed to dementia but are in fact the results of environmental and care factors.

      You are right, great care should be taken to evaluate people on a case-by-case basis and to try all possible behavioural and environmental interventions before turning to antipsychotic medications as an absolute last resort. More about that here: http://myalzheimersstory.com/2015/09/26/7-things-you-should-know-about-how-and-why-antipsychotics-are-inappropriately-prescribed-to-people-living-with-dementia-in-care-facilities/

      Thanks again for commenting; I’m glad medication worked for your mom.

  3. Thank you for this reply to my comments on a post yesterday. I’ll watch the video later tonight. This is just in time to share with our caregiver’s support group. dg

    • Yep, we need to find options. The trend toward softening the laws around assisted death I see as an exploration of alternatives. There is no way we will be able to support the virtually inverted demographics pyramid of young compared with old. It just can’t happen. We will need to make different choices.

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