Care Partnering, Challenges & Solutions, Resources, Toward better care

20 questions that help explain why people with dementia get agitated and physically aggressive

Note: this post has been shared thousands of times since I first published it. Also, Dr. John Morley, director of the division of geriatric medicine at Saint Louis University, one of the United States foremost authorities on geriatrics, and former editor of the Journal of America Medical Directors Association called the piece a “wonderful insight, which should be required reading for all persons who have to work with persons with Alzheimer’s disease.” 

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Imagine this:

It’s a bitterly cold winter night. You have recently been drafted into the role of caring for your father who has dementia. You are in his house in the country, miles from the nearest town. He is a BIG man. A strong man who has farmed the land he lives on for decades. He believes he’s somewhere else. In a strange hotel with strange people. And you are one of them.

Despite the fact that he thinks he doesn’t know you, he wants you to take him home. You argue for several hours. In the end, he begins to get physically aggressive.  He tries to break a window when you block him from getting out the door. Years later you learn the situation could have been avoided. His aggression wasn’t his fault. It was yours.

I have learned through personal experience, reading and research that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. They react as any “normal” person would, but their behaviour is attributed to the disease rather than to whatever catalyst actually sparked it.

Many people with dementia are needlessly medicated for aggressive behaviour provoked by the environment and the people around them. Care partners need to find ways to hang up their boxing gloves instead of getting into the ring with people who live with dementia. Other dementia care pioneers share my belief that we can and should reduce, if not eliminate, the antipsychotic medication that is currently given to people with dementia to treat aggressive behaviour. It sedates PWD into compliance. I agree with dementia care experts such as Teepa Snow, Naomi Feil, Dr. Allen Power, Judy Berry, Eilon Caspi, and a growing wave of others who say that to provide compassionate care to PWD we need to see the world through their eyes.

20 questions

Here are 20 questions to ask yourself to help you understand why someone with dementia might get angry or aggressive:

  1. What would you do if you had to walk a mile in their shoes?
  2. How would you react if your children took your car keys away for no reason and told you couldn’t drive anymore?
  3. How would you react if people told you it was daytime when you knew for a fact it was the middle of the night?
  4. How would you respond if someone told you strangers would be coming to your house where you had lived alone for decades to take care of you because you couldn’t take care of yourself?
  5. What would you say if someone came and took your dog or cat away?
  6. How would you react if somebody kidnapped you from your home and took you to a prison full of sick and crazy people?
  7. What would you do if the people in the prison ordered you to sit down when you wanted to stand up? Or made you stand up when you wanted to sit down?
  8. How would you react if you wanted a drink and were told you couldn’t have one?
  9. How would you respond if you loved peace and quiet and you were surrounded by loud noises, and strangers who shouted, groaned and talked nonsense all the time?
  10. How would you react if people less than a quarter your age talked to you like you were a two-year old?
  11. What would you do if you wanted to escape, but all the doors were locked and you didn’t have a key? What would you do if you weren’t allowed out – ever?
  12. How would you react if somebody tried to force-feed you? What would you do if somebody made you swallow pills you knew would put you to sleep when you wanted to be awake?
  13. What would you do if a stranger tried to take something that belonged to you? What if they managed to get it and they wouldn’t give it back?
  14. How would you respond if someone told you weren’t allowed to go into your own room? Or open a door? Or close a drawer? Or pick something up? Or put something down? Or go outside? Or go inside? Or do whatever you wanted?
  15. What would you do if you were trapped, and you cried for help, and someone put you in a chair you couldn’t get out of and said you had to stay there?
  16. What if a stranger wanted to come to the bathroom with you? What if he tried to undress you? What if he put his hand between your legs and under your arms and under your breasts?
  17. What if you said you didn’t want to have a bath but people took your clothes off anyway and then they forced you into the bath and told you to calm down and be quiet?
  18. What if things like this happened every day? How would you feel?
  19. How would you express your feelings if you couldn’t find the words? What if you did find the words and no one listened?
  20. What would you do if you were alone and powerless? How would you react if you had no control over your own life? What if you felt incompetent, invisible and inconsequential?

What would you do?

Based on my own experience, research and training with Teepa Snow, I developed a process called “BANGS” to help myself and others avert “shoot outs” with people who live with dementia. It’s easy and it works. You can learn the steps and use it too.

Watch my free one-hour webinar on BANGS here, or see it in individual chunks at these links:

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for go with their flow, let go of your ego, get over it, get on with it, get down to it

“S” if for say you’re sorry

Download a PDF here: 20 Questions that Help Explain Dementia Aggression

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/

Take my short survey on behaviour here.

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

teepa snow shows how to help someone living with dementia to put on a jacket or sweater without resistance

Image credit: Teepa Snow (screen shot from the video below)

“If only I had known,” is what I say to myself every time I see a Teepa Snow demo I haven’t seen before. This one was no exception when I first stumbled across it.

I had very few problems helping my mom get dressed. But how many times did I watch care workers struggle to do the same? Too many that’s how many! When I saw Teepa demo how easy it can be in the video below, I again wondered why EVERYONE who cares in some way for someone who lives with dementia isn’t trained in Teepa’s practical, positive approaches to care.

People who live with dementia “resist” receiving care for good reason: because, more often than not, we don’t know how to do things in ways that make them feel at ease.

Just watch the five-minute video below on how to help someone living with dementia put on a jacket or sweater in such a way that both care partners can feel good about what’s going on, and see if you don’t agree. I guarantee you will discover something you didn’t know or hadn’t thought of before.

Learn a few dead-easy techniques (including Teepa’s trademarked Hand Under Hand) that may help transform your life from misery to magic:

More here:

10+ Teepa Snow videos on dementia basics

Teepa Snow demos Hand Under Hand™ dementia care to connect, comfort and “control”

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

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Activities, Inspiration, Life & Living, Videos

team of four elder swimmers with an average age of 90 breaks world record

The four swimmers (aged 86, 89, 92 and 93) who are the subjects of the inspiring video below broke a world record in a 200-meter freestyle relay in which they each swam 50 meters. If that isn’t inspiration enough, one of the two women on the team was unable to attend the previous year’s event because she was recovering from a broken neck at the time. Asked what kept her going, she responded: “Swimming!”

If you think this post has nothing to do with dementia, you’d be wrong. Exercise and attitude are important factors in staying healthy as we age, particularly with respect to boosting brain power. Here’s what Canada’s ParticipACTION program says:

“Physical activity is protective against the onset of dementia and slows its progression. The deterioration of the brain’s prefrontal cortex and hippocampus, which play important roles in complex thinking and memory formation, is usually associated with dementia. Luckily, these two areas are very responsive to physical activity, and tend to be bigger in size among people with higher fitness levels. This means that by constantly stimulating your brain through physical activity, you can effectively extend your years of good mental health.”

It’s equally important for people who live with dementia to stay physically active and to engage with life for as long as they possibly can. Here are 101 activities you can do with your dementia care partner. Activate!

If you like this post, why not subscribe to my free updates?

Care Partnering, Love, Toward better care

painful care partner choices: love or loss (or sometimes both)?

UK dementia care pioneer David Sheard talks about two stark choices that each of us who loves someone who lives with dementia must make at some point in the journey – maybe even multiple times every day. Both choices, both paths, are painful. But one of the two creates the possibility for love, compassion, joy, and growth, while the other inevitably leads to regret, sorrow, despair and loss.

In the video below, Sheard speaks in reference to family and friends visiting loved ones who live with dementia in long-term care. But I think his wisdom applies equally to those who are primary care partners and living with their loved ones on a full or part-time basis in their homes or in the community.

Of the dozens of videos I’ve watched on dementia care, this is the one that I think is perhaps the most important of all in fundamentally changing the way we approach co-creating and maintaining loving and productive relationships with those whom we love one who live with dementia. It underlies everything else. I invite you to watch and share. Thank you.

https://myalzheimersstory.com/2018/06/24/what-if-everything-weve-been-taught-about-dementia-care-is-a-lie/

https://myalzheimersstory.com/2018/05/24/5-ways-to-make-toast-in-long-term-dementia-care/

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Image copyright: shaiith / 123RF Stock Photo

Care Partnering, Resources, Tips, tools & skills

20 questions to change the direction of dementia anxiety and aggression

Change the direction of dementia aggression

I discovered through personal experience, research and observation that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations, just like most of the rest of us do. Although they react as any “normal” person would, their behaviour is more often than not mistakenly attributed to the disease rather than to whatever catalyst actually sparked it.

People living with dementia are people; they respond normally when they are threatened, demeaned and made to feel powerless: they resist, lash out, become agitated or try to flee. Blaming the disease leads us in the wrong direction. What we should be doing is asking ourselves questions to reset the compass ; questions such as:

  1. What might I and/or others have done to precipitate this situation, and how can I rectify it as quickly as possible with as little disruption as possible?
  2. Would I behave the same way in similar circumstances? How would I feel? What would I want?
  3. How can I defuse the situation? (Hint: do not tell people who are upset or agitated to “calm down!”)
  4. What is threatening the person? How can I remove the threat?
  5. How can I help this person feel more at ease?
  6. What unmet need might this person be expressing? Is s/he in pain or experiencing some other kind of physical discomfort? Is s/he hot, cold, wet, thirsty, hungry, etc.?
  7. What environmental factors might be contributing to his/her anxiety, and how can I neutralize them?
  8. Is my tone of voice conciliatory and respectful?
  9. Is my body language relaxed and open?
  10. Can the person see and hear me properly?
  11. Have I surprised him/her in some way?
  12. What action can I take right now to restore calm?
  13. How can I meet her/his immediate need?
  14. How can I meet her/his deeper need?
  15. Have I said I’m sorry?
  16. What more can I do to empathize?
  17. Could I ask for the support of someone else who might be more effective in dealing with this situation?
  18. What could I do differently next time?
  19. What can I learn from this?
  20. How can I share that learning with others? How can apply my knowledge to engage more effectively with this person and others who live with dementia in the future?

Too many people with dementia end up needlessly medicated for behavioural expressions that are provoked by the environment and the people around them, including paid care workers and family members such as myself who are drafted into caregiving roles with little or no experience or training.

By questioning and reframing, I believe we can transform the way we see dementia and the people who live with it; we can also find ways to deliver better care. Specifically with respect to the issue of aggression, putting ourselves in the place of PLWD will help us discover what might underly behaviour we find challenging or problematic. We can then address the underlying causes instead of inappropriately prescribing antipsychotic medications.

Download the 20 questions pdf here.

Note: I developed a process called “BANGS” to help myself and others avert “shoot outs” with people who live with dementia. It’s easy and it works. You can learn the steps and use it too. The BANGS model is outlined at these links:

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for go with their flow, let go of your ego, get over it, get on with it, get down to it

“S” if for say you’re sorry

BANGS: 5 surefire ways to stop anger and aggression in people who live with alzheimer’s disease in the early, mid, and later stages

Activities, Love, Videos

it ain’t no bowl of cherries; but it could be a basket of pompoms

140906-pompoms-basket-cropped

Too often people are constrained by what they are told they can’t do rather than encouraged to do what they can.

I learned so much with respect to abilities and labels during my Alzheimer’s story with Mom. I wanted to help her engage life as much as she could for as long as she could; that was my goal. Yes, her abilities declined as the disease progressed, but there were always things she could do. Always. That’s why I never stopped trying new things or re-trying things I had tried before to keep her as active and as healthy as possible despite the degeneration caused by the disease.

On September 6, 2014, two years before she died, I experimented with a basket of pompoms of different colours and sizes. Mom started playing with the pompoms as soon as I put the basket on her lap. She picked them up, rolled them around in her hands, held them up to show me.

“This is a yellow one,” she said of the pink one pinched between her thumb and index finger.

“Yeah, it’s bright,” I replied

“It’s bright,” she echoed. Repeating what was said around her had become Mom’s way of making conversation and staying connected with people. She may or may not have understood everything that was being said, but she wanted to participate damn it! That was her character. She drew on decades as a successful real estate agent for her “social chit chat” skills. She had a hard time completing sentences from early 2014 onward, but she still had moments of astonishing clarity and a strong will to express herself.

Here’s a snippet of what happened with the pompoms:

I rarely mourned the loss of the Mom I knew: a competent, funny, fiery, fiercely independent business woman who was always on the go. Sometimes during our journey, I prayed that she would both go and stay. Her condition was sometimes heartbreaking to witness, but I didn’t shed more than the occasional tear over the things she couldn’t do — I focused my energy on the many things she still could do.

Mom may have been confused, but my mission was clear to me. I wanted to help her engage with life and with others for as long as possible. We did simple things together: stood up, sat down, walked a little way, counted to three or four or five or 10 on a good day; we sang, clapped our hands, made up silly rhymes, “cooked,” had tea with friends, went for a drive, picked out the yellow and green pompoms from the basket on her lap. We listened to music, we made music, I painted her nails.

Sometimes we talked about dying. Or about love. Living with Alzheimer’s wasn’t a bowl of cherries for either of us. Just like it’s not for millions of others around the world who live with dementia of the Alzheimer’s type and other dementias right now. We could have moaned, whinged and complained about our sad lot. We could have given up. But that wasn’t in Mom’s nature, nor is it in mine. What good would giving up do? Better to keep going. When happiness fails to knock at your door, better create your own joy.

A basket of pompoms is as good a place to start as any.

https://myalzheimersstory.com/2015/05/29/101-activities-you-can-enjoy-with-a-person-living-with-alzheimers-dementia/

https://myalzheimersstory.com/2017/09/11/flute-flies-love-taps/

Take my short survey on behaviour here.

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

Teepa Snow shares 10 tips to deal with hallucinations

Hallucination surreal scene
People who live with dementia may see “strange” things we don’t

 

It can be disturbing, even frightening, for both a person living with dementia (PLWD) and her or his care partner when the PLWD has hallucinations.

We are taught that hallucinations are abnormal, the hallmarks of “crazy people,” and witnessing someone having hallucinations for no apparent reason is unsettling. It’s important to first check whether the hallucinations may be caused by physical factors such as a urinary tract infection (UTI). They may also be a side effect of a wide variety of medications, a combination of medications, or over medication. Investigate these potential causes.

Also, remember that mistaking one thing for another is not  “hallucinating.” For example, confusing the telephone with the TV remote is not a hallucination–it’s a misperception. If you stay calm and act normally when a PLWD has a hallucination, you can help reduce her or his anxiety (as well as your own) and keep everything on an even keel.

Imagine this for example:

Cricket and her mother Annie are alone in the kitchen of Annie’s house. They’re chopping carrots for supper. Annie is in the “amber” stage of dementia; she turns to Cricket.

“Where did the girls go?” Annie says.

“What girls Mom?”

“The two girls that were here.”

Cricket and Annie have been alone in the house for at least a week; they haven’t had any visitors during that time. “When Mom?” Cricket asks for clarification. “Two or three minutes ago!” Annie sounds annoyed. “Don’t be so stupid Cricket.”

Back in the early days, when Cricket was still a wet-behind-the-ears care partner, she would try to convince Annie that whatever other reality her mother was experiencing was not real. Cricket soon learned this approach didn’t work; it invariably ended in an argument. Cricket decided to change her behaviour. Thus:

“Oh, those girls, now I know who you mean Mom,” Cricket’s tone is calm and even.

“Well, where did they go?” Annie is still annoyed.

“I think they had an appointment. It was kind of rude of them to leave without saying goodbye wasn’t it?”

“It sure was.” Annie shakes her head.

“There’s no accounting for some people’s behaviour eh Mom?”

“No. It’s the last time I invite them here.”

“Good idea, Mom.”

In this example, Cricket defused the situation rather than fuelling it or escalating into an argument. She also turned her mother’s anger away from herself and redirected it toward the imaginary girls against whom she and her mother then became “allies.”

10 tips to deal with hallucinations

Going with the flow works wonders, but it takes awareness and practice. Here are some hands-on tips that can help:

  1. approach the PLWD’s preferred side
  2. verbally greet the PLWD
  3. move into PLWD’s personal space when invited
  4. use Hand Under Hand™
  5. repeat/agree/validate
  6. repeat/agree/validate
  7. take control of the situation
  8. allow the PLWD “off the hook”
  9. go with the flow
  10. repeat/agree/validate as required

Watch  dementia care pioneer Teepa Snow demonstrate in this short video:

 

 

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Care Partnering, Family, Hope, Humour, Joy, Life & Living, Love, Spirituality

albina takes internet by storm with joy

 

Albina sees herself on TV

 

Joyful Albina Foisy is an overnight Internet sensation.

Her son Armand took a video of her playing in the snow. It went viral. I quoted her and shared that video here.

Then Armand took another video of Albina watching herself on TV.

It also went viral.

Here’s why: Continue reading “albina takes internet by storm with joy”

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

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

Teepa Snow calms crisis no video

When people feel trapped and terrified, they get agitated, anxious, and sometimes aggressive. It’s normal behaviour for human beings to lash out when they feel threatened, whether they have dementia or not.

Unfortunately, many people who care for people living with dementia (PLWD), including family, friends, healthcare personnel and caregivers, blame this normal behaviour on the disease rather than finding and addressing the real underlying causes.

More often than not, something in the environment or in the way the person with dementia is being treated or approached prompts the aggressive behaviour, which is in fact a perfectly normal response to something the PLWD may perceive as a threat of some kind.

In the video below, dementia care pioneer Teepa Snow tells the story of de-escalating a situation in which an 89-year-old woman with dementia became violent when care facility staff and EMS personnel tried to get her onto a gurney.

I have personally gone through similar events. At the time, I had no idea what to do. I have since seen others in versions of the same scenario; it’s clear they either don’t know what to do or if they do know what to do they aren’t doing it.

 

Instead of blaming the PWLD and the disease and then “drugging them up” as Snow says in the video, we need to learn how to:

1) prevent crises from happening in the first place

2) de-escalate if and when they occur despite our best efforts

Here are 10 techniques anybody can use to calm a crisis in which a PLWD becomes distressed and/or aggressive (see disclaimer):

  1. Remove the threat
  2. Create space
  3. Get on her/his side
  4. Get at or below eye level
  5. Use Hand Under Hand™
  6. Breathe in sync
  7. Calm your voice
  8. Relax your body
  9. Attend to her/his needs
  10. Be willing to go where he/she is

Learn how to put the tips into practice by watching this five-minute video with Teepa Snow:

More here:

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

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/

Care Partnering, Music, Resources, Tips, tools & skills

101 activities you can enjoy with a person living with alzheimers dementia

060808-georgeville-flower-win just flowers

If you’re at a loss for things to do with someone who has Alzheimer’s disease or another form of dementia, you needn’t be. The possibilities are endless. Almost ANYTHING can lead to engaging life when you are present in the moment. Open your eyes and your heart to really being in a space and doing activities that bring you both pleasure.

A person with Alzheimer’s disease can take you back to old places and fond memories as well as to new places you never dreamed existed. All you have to do is open the door to their world and step through the threshold together. Remember to be curious and childlike. Rediscover how exciting exploration can be. See magic and possibility instead of tragedy and limitations. I have enjoyed doing a whole slew of activities with people with dementia at all “stages” of the disease.

Here are five things you can do when your loved one is still at home, and five others that may be more appropriate when he or she is in a care facility; anyone else can do them too (a PDF of 91 more is at the bottom of the post):

1) Arrange Flowers

In summer, we picked wildflowers together and used many of the beautiful vessels and vases at our disposal  to create stunning arrangements. In winter, I bought a couple of bouquets at the local grocery store on Mondays when they were on sale and re-arranged them several times through the week.

2) Solve Puzzles

I bought a BIG-piece puzzle of Canada and set it up on the dining room table which we rarely used for eating. The puzzle sat there at the ready whenever we felt like working on it. This was a great activity we did over and over again for about eight months until it became more frustrating than enjoyable.

3) Walk

The need for exercise never ends, especially for people who are active and sporty. People with dementia don’t lose the ability to walk until late in the disease so we walked every day come rain, snow or shine.

The benefits of exercise for human beings and animals of any age are well documented. Exercise burns calories and excess energy and has a calming effect. It helps sleep patterns and improves attitude. There’s no downside.

4) Bake/Build

Making and giving away baked goods is something many women enjoy doing – whether they are young or old and whether they have dementia or not. As the diseases progresses people with dementia may need more help, but they still take great pleasure in the process as well as the results.

I find it helpful to get out and measure all the ingredients before we start to mix things together. Putting each ingredient away after it’s added is a good way of tracking what has been done.

Men may be more accustomed to woodworking, “fixing,” or doing DIY chores around the house. Use the same “baking” principles to help them feel useful.

5) Fold

At a certain point in the progression of the disease many people with dementia take to folding whatever is at hand – napkins, tissues, dishtowels, papers, newspapers, etc. Folding often had a calming effect on my uncle for example even though he often did it it in a somewhat compulsive way. You may find yourself supervising the folding of lots of laundry!

When you visit your loved one in a care facility, there are still many activities to enjoy together.

6) Sing

Singing can be done anywhere, anytime and is such an uplifting activity. I learned many old favourites and have spent hundreds of hours enjoying informal singsongs with people who have dementia. We burst into song whenever the mood strikes us.

7) Play music

With the help of a healing music coach PWD may “learn” how to play the piano and other musical instruments. They often enjoy keeping the beat with percussion instruments as well as their hands and feet.

I have sung literally thousands of songs during hundreds of hours of healing music sessions the joy of which I sometimes find hard to put into words. I’m so grateful for what I learned as a result of these musical miracles.

8) Count

One person living with dementia surprised and delighted me by counting the chimes when her old antique clock struck the hour. It inspired me to string some colourful wooden beads on a shoelace. She spent lots of happy hours counting the beads as she moved them back and forth along the string while I encouraged her.

9) Walk some more

I encourage you to walk with your PWD every day and to encourage them to exercise in whatever way they can. While the ground  you cover may be a tiny fraction of what you had been used to, it’s even more important to a person’s overall health to stand up and move around was the disease progresses. Help your loved one achieve her or his goal to keep going as long as she or he can.

10) Socialize

Socializing and being included in conversations is a great blessing to people with dementia.

Your choice of activity should accommodate the capacities of those involved, the mood of the moment, personal preferences, physical considerations, the environment, available resources, etc.

The important thing is to do something that stimulates, engages and is fun for the person with dementia as well as the care partner who doesn’t have dementia.

Here’s a PDF of 101 “starter ideas” I recreated from an Alzheimer’s Association post: 101 Activities Dementia Care Partners Can do Together

Of those listed, I have done at least half. I’ve also done some not on the list, which I intend to share in the future. Stay tuned! Another great idea is to plan weekly outings to a local club or activity center purpose-built for seniors. Find tips about that here.

https://myalzheimersstory.com/2014/06/16/5-things-i-never-knew-until-i-sang-with-my-alzheimers-mom/

https://myalzheimersstory.com/2016/09/06/5-good-things-alzheimers-brought-more-of-into-my-life/

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