Advocacy, Antipsychotic drugs, NHBPS, Toward better care

20 compelling reasons to rethink the way we label and medicalise the behaviour of people who live with dementia #BanBPSD

In June this year, I posted an open letter to the worldwide dementia care community. Since then, advocates and activists such as myself, including Dr. Al PowerDaniela GreenwoodHoward GordonLiz LesterLeah BisianiSonya Barsness, Dr. Chris Alderman, Kate Swaffer, and others, have joined forces to create an awareness and action campaign calling for the ban of the damaging and stigmatizing artificial construct BPSD (the short form of “behavioural and psychological symptoms of dementia).

As part of the campaign, fellow human rights and dementia care advocate Kate Swaffer penned “Rethinking Dementia: Normal Human Responses,” an excellent post wherein she lists fourteen simple examples of why we should #BanBPSD. Here are five from Kate’s list of 14 [I’ve added bits here and there, which I have enclosed in square brackets]:

I would add these six to Kate’s list of 14:

15 ) Labeling, medicalising and punishing normal human responses to being told to sit or stay still for long periods of time is abuse. Most people (75 per cent) say they would start to feel restless if made to sit longer than half an hour.

16 ) Labeling, medicalising and punishing normal human human bodily functions is cruel and abusive.

17 ) Labeling, medicalising and punishing an individual’s lifelong normal behaviour is cruel and abusive.

18 ) Labeling, medicalising and punishing an individual’s normal human responses to inadequate care, harmful environmental conditions and being restrained is cruel, abusive and wrong.

19 ) Labeling, medicalising and punishing an individual’s normal human responses to cruel, abusive, harmful and wrongful treatment by physically restraining them is abuse.

20 ) Labeling, medicalising and punishing an invidivual’s normal human responses to cruel, abusive, harmful and wrongful treatment by chemically restraining them is abuse and should be made criminal.

I highly recommend reading the full text of Kate’s excellent piece here, and I invite to also read my article “the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease,” which was published in the Journal of the American Medical Directors Association.

#IAmChallengingBehaviour #BanBPSD #WeCanCareBetter

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

7 problems with BPSD

the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease

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Advocacy, Antipsychotic drugs, Toward better care

7 problems with BPSD

The term “behavioural and psychological symptoms of dementia” (BPSD) is a harmful artificial construct used to inappropriately describe reasonable responses to adverse conditions and circumstances (RRACC) when such responses are expressed by people living with dementia (PLWD).

Some of the damaging and stigmatizing labels and descriptors associated with BPSD are “wandering,” “exit-seeking behaviour,” “challenging behaviours,” “combative,” “aggressive,” etc.

The term BPSD was coined in the late 1990s by the International Psychogeriatric Association (IPA). Twenty years on, a growing number of dementia care advocates worldwide are calling for the BPSD construct to be rejected by the geriatric healthcare professionals and researcher and to be banned from dementia care language (#BanBPSD). Prominent among those calling for the paradigm shift are dementia care pioneers Kate Swaffer, former nurse and care partner, speaker, blogger, activist, and author of What the Hell Happened to My Brain?, and Dr. Allen Power, geriatrician, speaker, author, trainer, consultant.

Dr. Power, whose books Dementia Beyond Drugs and Dementia Beyond Disease, are essential reading for geriatric health professionals, care workers and care partners, summarizes the problems with BPSD like this:

1 ) Relegates people’s expressions to brain disease

2 ) Ignores relational, environmental, historical factors and causes

3 ) Pathologizes normal expressions

4 ) Uses flawed systems of categorization

5 ) Creates a slippery slope to drug use

6 ) Fails to explain how drug use has been successfully eliminated in many nursing homes

7 ) Misapplies psychiatric labels, such as psychosis, delusions and hallucinations

Essentially, the broken lens of BPSD stops us from seeing the real causes of the reasonable reactions to adverse conditions and circumstances (RRACC) when expressed by PLWD, and thus impedes dementia care practitioners and researchers from finding and employing effective, enabling and engaging solutions to the distress experienced by many PLWD.

#IAmChallengingBehaviour #BanBPSD #WeCanCareBetter

https://myalzheimersstory.com/2017/11/25/101-potential-causes-of-behaviours-by-people-living-with-dementia-that-institutional-care-staff-may-find-challenging/

https://myalzheimersstory.com/2017/11/15/the-broken-lens-of-bpsd-why-we-need-to-rethink-the-way-we-label-the-behaviour-of-people-who-live-with-alzheimers-disease/

 

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Advocacy, Antipsychotic drugs, Toward better care, You said it!

we need a paradigm shift

As a retired medical writer and care partner for my parents (both with dementia/Alzheimer’s), I am relieved to see a growing number of health care professionals who have stopped focusing on the cure and ineffective treatment options. Throwing Big Money at Big Pharma is a Big Mistake.

Concurrent to understanding the underlying physiological causes of dementia, we need to immediately address the emotional and psychological symptoms and fallout of living with it, for both the people who have it, and those who are their companions and carers. This aspect of living with dementia is largely ignored at the moment.

We also need financial assistance to help people living with dementia (PLWD) stay in their homes, given the atrocities committed in residences and long-term care facilities. Healthcare systems throughout North America and elsewhere in the world (e.g. the UK) are in crisis and are ill-equipped to do what is required; they are too big to shift quickly enough to meet the needs.

We need open-minded entrepreneurs to step up and use innovative resources to ensure a good quality of life for PLWD. People living with dementia are angry and restless and with good reason; they need to be heard, not shut up, put away and restrained. And antipsychotics? No way. We need a paradigm shift, and it’s not going to happen until more people like you, Dr. Power, with your credentials and credibility, step up and speak the plain truth. Thank you.

Read more of Lorrie Beauchamp’s insightful thoughts on ADRD and being a care partner on her blog Unforgettable. Follow her on twitter here.
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you said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.

https://myalzheimersstory.com/2018/04/20/whos-in-charge-where-are-they-and-do-they-care-2/

 

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Resources, Tips, tools & skills, Toward better care

two quick dementia care conversation tips from dr. al power

I highly recommend Dr. Allen Power’s two books Dementia Beyond Drugs, and Dementia Beyond Disease for care partners and care workers who want to deepen their understanding of how to best engage and support people living with dementia.

The books aren’t cheap. BUT, they are excellent value: full of real-life stories, tips, perspectives, new ways of thinking,  and good, solid, practical care giving advice. I reference them all the time.

I was delighted to chat briefly with Al via Zoom about two ways to foster rich and enjoyable conversations with people living with dementia at any stage. Essentially, they boil down to:

  1.  reframe questions as statements
  2.  offer choices in a variety of ways depending on the person

Watch the video for more:

More from Dr. Power and Dementia Beyond Disease here:

10 pieces of wisdom from dr. allen power & dementia beyond disease

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Advocacy, Challenges & Solutions, Toward better care, Videos

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.

 

https://myalzheimersstory.com/2016/03/30/20-ways-to-create-dementia-care-homes-away-from-home/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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