Tag: responsive behaviour

Antipsychotic drugs, Quotes, Resources, Tips, tools & skills

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

amazingsusan

In mid-2014, I devoured Dr. Allen Power’s first book Dementia Beyond Drugs: Changing the Culture of Care. My tattered copy is full of underlines, stars, tick marks, and highlights. I’ve referred back to it so many times the pages are starting to fall out.

I kick myself for waiting too long to get his second book Dementia Beyond Disease: Enhancing Well-Being, but now that I have it in my hot little hands, I’m eating it up as well. It’s hard to say what I love most about Dr. Power’s work, but I was hooked after I saw his alternative to the biomedical model, which, to be honest, I didn’t even know existed until I read his first book.

We need more forward thinkers and innovators such as Dr. Power, who, with Dementia Beyond Disease, takes another giant step forward and pushes the envelope with respect to care models, well-being, and how we perceive dementia as well as the people who live with it.

Here are 10 pieces of wisdom I’ve extracted from the prologue and first chapter alone:

1 ) We lament the millions of neurons lost to dementia and ignore the many millions that work perfectly well.

2 ) Preserve identity, celebrate personhood, and create meaning in the moment.

3 ) Many people have acquired a special type of wisdom that comes from living with dementia. They have come to see their lives as far from over, for they have had to deal more directly and personally with grief, loss, and the sense of impending death.

4 ) Changing our approach can produce more well-being for people living with dementia than any pill that is available today, or is likely to be available in the foreseeable future.

5 ) Well-being cannot be bottled. It doesn’t come in liquid, capsule or pill form.

6 ) We create living environments based on our view of the world, our daily needs, and our staffing patterns, and expect people whose brains are changing to adapt to them. And when they cannot, we diagnose a “behaviour problem” and medicate them.

7 ) Dementia is a shift in the way a person experiences the world around her/him.

8 ) People with dementia continue to learn new information, incorporate data, and use problem-solving skills to adapt to their changing perceptions.

9 ) Over-medication of people with dementia is not simply a problem in nursing homes; it is a community-wide problem that reflects broad societal views.

10 ) We need to change our minds about people whose minds have changed.

Dr. Power’s books are priced in keeping with their value, and are worth every penny. I can’t recommend them to you highly enough.

https://myalzheimersstory.com/2018/04/30/two-quick-dementia-care-conversation-tips-from-dr-al-power/

https://myalzheimersstory.com/2015/10/10/is-your-dementia-glass-half-empty-or-half-full/

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Challenges & Solutions, Resources, Tips, tools & skills

is your dementia glass half empty or half full?

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Glass half full

“This time next year she won’t remember me,” I thought in the autumn of 2011 when I abandoned my life as an expatriate businesswoman in Dubai to come back to rural Canada to care for my Mom who lived with dementia of the Alzheimer’s type.

After a year she would be placed in a facility where they would take better of her than I could (at least that’s what I imagined), and I’d leave to restart my life somewhere else. That plan was based on what I knew about dementia and dementia care at the time, which was next to nil.

Like most people, I saw Alzheimer disease and other dementias as a terrible tragedy in which those who live with dementia are on a journey that is nothing more than a long slow, tortuous train through hell – a journey in which they are robbed of their very selves as they disappear into a black hole of oblivion. I was mistaken in those beliefs. Today, based on my experience with people who live with dementia, I see the disease and those who have it in a completely different light.

But I was right about one thing. On November 16, 2012, a little over a year after I came back to Canada from Dubai, Mom was placed in a long-term care facility. Once I saw the reality of institutional care, I again abandoned my own life plan to stay close by her side and be her advocate.

To say that my advocacy was not well received would be an understatement of gargantuan proportions. It took another year before I understood some of the fundamental reasons why the powers that be and I were at such serious odds. The roots of the conflict around my mother’s care lay in perspective, power and control. On the issue of perspective, this chart, from Dr. G. Allen Power’s book “Dementia Beyond Drugs: Changing the Culture of Care,” captures the essence of where experience took me:

Biomedical vs Experiential models of dementia

When I first read down the right-hand column I found myself nodding in agreement on every point.

My dementia glass is half full. I am 100% sure, based on my own experience, that people with dementia still have great potential for life and growth, they can still learn, and their responsive behaviours are attempts to cope, problem solve and communicate their needs. This is no theory. I know it to be true because I’ve experienced it first hand.

As a result, I am completely convinced that individualized, person-centered living that engages people who live with dementia is critical to their well being. Positive approach to dementia care advocates worldwide share my view; research supports our position.

On the other hand, I suspect that many institutions and people in the medical profession still subscribe to biomedical model that leads to the high use of medications (particularly antipsychotics such Risperdal and Seroquel), and produces needless suffering and decreased well being.

The biomedical model is outdated and out of step with the reality and the needs of people living with dementia as well as their care partners.

It’s time for a change. People living with dementia deserve better. So do the people who walk with them.

Download a pdf of the models chart here.

https://myalzheimersstory.com/2017/05/28/10-pieces-of-wisdom-from-dr-allen-power-dementia-beyond-disease/

https://myalzheimersstory.com/2018/05/19/we-need-a-paradigm-shift/

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Challenges & Solutions, Teepa Snow, Tips, tools & skills, Videos

Teepa Snow’s 7 powerful things a care partner can say to stop anger and aggression in a person with dementia

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One of the most useful things I’ve learned on this dementia journey is that when people who live with dementia exhibit responsive behaviours which appear angry and/or aggressive there’s usually a perfectly reasonable and rational explanation for it – from their point of view.

Such behaviour is not random (although it may appear to be), it’s not willful (although it may appear to be), and it’s not their fault (although it may appear to be).

“Problematic” responsive behaviour is most often the result of:

The obvious way to stop anger and aggression is to address the root cause:

  • Find and address the physical issue
  • Identify and remove the environmental trigger(s)
  • Stop blaming them and start taking responsibility for causing responsive behaviours

In the third instance, dementia care expert Teepa Snow suggests learning, practicing and using these six simple phrases to acknowledge the person, accept responsibility, diffuse the situation, restore positive energy and create the opportunity for healing.

  • “I’m sorry I was trying to help.”
  • “I’m sorry I made you angry.”
  • “I’m sorry I embarrassed you.”
  • “I’m sorry I made you feel stupid.”
  • “I’m sorry I didn’t mean to, but I treated you like a child.”
  • “I’m sorry, this is really hard.”

Meaning what you say when you say these phrases is important. Putting yourself in their shoes is helpful. Ask yourself these 20 questions to imagine what they might be feeling.

You can experience the power of the statements in the video below in which Teepa plays the part of a care partner, and the woman in the light blue top plays the part of a person living with dementia.

I know these words work because I have said them many times myself.

I would add one more phrase: “You’re right. I’m sorry, I was wrong.”

Telling the other person they are right is extraordinarily powerful. It’s like throwing a big wet blanket on a small campfire – it smothers the flames immediately. Clearly the wet blanket will be less effective on a towering inferno; you must stop the fire before it gets out of control.

An even more effective strategy is to not do things that are helpful in intent but not helpful in reality, and to not do or say things that embarrass, demean, patronize or anger the person to start with! Then there’s no need to apologize 🙂

“I’m sorry” isn’t easy for most people to say. It’s even more difficult for family care partners with all kinds of goop in the relationship soup. But they work. They really do. Why? Because “suddenly you’re in a different place than you were. And that’s because you were willing to do something different.” If you want to change the dance, you’ve got to change the steps.

See also:

https://myalzheimersstory.com/2015/06/09/10-teepa-snow-videos-on-dementia-basics/

https://myalzheimersstory.com/2015/08/28/teepa-snow-demos-10-ways-to-calm-a-crisis-with-a-person-living-with-alzheimers-dementia/

Take my short survey on behaviour here.