Category: Resources

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

My Alzheimer's Story
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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Advocacy, Resources, Toward better care

what if everything we’ve been taught about dementia care is a lie?

My Alzheimer's Story

That’s what Dr. David Sheard asked himself in 1995, along with “What if people with dementia don’t have any behaviours?” and “What if we’re actually killing them?”

Based on the answers to those questions, he founded Dementia Care Matters and developed the Butterfly Household Model of Care, a framework that transforms the care home cultures and environments into ones in which people living with dementia can thrive instead of just die.

This Toronto Star video shows what that transformation looks like, and fills me with hope for the future:

More on the in-depth story entitled “The Fix,” by the Toronto Star’s Moira Walsh here.

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

https://myalzheimersstory.com/2016/04/23/5-ways-we-rob-people-with-dementia-of-their-dignity/

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Resources, Tips, tools & skills, Toward better care

hot pink duct tape solves alzheimer seating issue

My Alzheimer's Story

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom.

I found this one to be particularly creative and practical; here’s a slightly edited version of what Catherine wrote in the support group update:

“I like to pass along tips I have figured out along the way; I hope others will find them helpful/useful.

I was having problems getting my mother to sit in her wheelchair. She just wouldn’t do it. Every time I would try to get her to sit, she’d have a panic attack and start screaming “no, I can’t!” while she grabbed my arms with an iron grip that caused them to be sore to the touch by the end of the day.

One evening I was sitting in the living room, looking at the wheelchair and wondering why she wouldn’t sit in it. Suddenly it occurred to me that her anxiety might be caused by the fact that the whole chair was black. “Maybe she can’t figure out where the seat is because the colour,” I thought to myself. Then I had an “Aha!” moment.

I found my daughter’s hot pink duct tape, tore off a three-inch strip, and stuck it dead center on the wheelchair seat. I thought if I used more, it would be too slippery, and as I wipe the cushion frequently, I also thought germs might adhere between the strips and the seat. Plus, a small square would be easier to remove/ replace.

I also found an old table leg and put some pink tape on the end of it. Now when I ask Mom to sit, I use the table leg as pointer. I tap the stick on the square of pink tape, and say, “Sit here, Mom.” Presto! She sits down pretty as you please. No more anxiety, no more struggle, no more sore arms!”

What a brilliant idea. Much better than saying a person is “resisting care,” or labeling her “combative” and then drugging her into compliance!

Thanks for being such a great dementia detective Catherine, for coming up with creative solutions like this one and for averting arguments by making your mom laugh. You are a care star!

turn potential dementia disasters into fun and laughter

10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

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Resources, Tips, tools & skills, Toward better care

5 ways to make toast in long-term dementia care

My Alzheimer's Story

UK dementia care pioneer David Sheard suggests the ways people with dementia are treated in long-term care facilities may be categorized into five types. He bases his theory on a study comprising 500 audits conducted by his consultancy Dementia Care Matters in the UK.

Sheard’s five types are:

  1. Positive social (10%)
  2. Positive (5%)
  3. Neutral (70%)
  4. Negative protective (10%)
  5. Negative restrictive abusive (5%)

He demonstrates in this telling five-minute video using the example of making toast:

Unfortunately, I witnessed lots of negative restrictive abusive “care” in Mom’s Dementia Jail. To be fair, there were some care workers who delivered what Sheard describes as positive social care, but they were by far in the minority, particularly among the nurses I’m sorry to say.

What have you seen most often in practice? Even better, what have you practiced or do you practice yourself?

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

25 dementia communication quick tips in 4 minutes!

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Resources, Tips, tools & skills, Toward better care

two quick dementia care conversation tips from dr. al power

My Alzheimer's Story

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

Teepa Snow demos 10 first steps to calm & comfort a distressed person living with dementia

My Alzheimer's Story

This four-and-a-half minute video by Teepa Snow (see below) demonstrates 10 easy steps to calm and comfort a distressed person living with dementia.

Truth be told, these practical actions would likely help calm and comfort anyone in distress:

  1. position yourself on the person’s dominant side
  2. useHand Under Hand™ (HUH™ video demo with Teepa here)
  3. pump hand you are holding (like a heartbeat)
  4. copy their breathing with emphasis on the exhale
  5. repeat issue using their words
  6. acknowledge & validate their emotions (more on validation here)
  7. mirror their emotional state
  8. calm & slow your own voice
  9. slow your breathing, continue emphasis on exhale (more on breathing here)
  10. check / confirm issue (e.g. you’re angry?)

These are also great:

10+ Teepa Snow videos on dementia basics

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

10 things to remember when you interact with people who forget

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Care Partnering, Resources, Toward better care

20 questions to ask when a care partner or resident walks around at night

My Alzheimer's Story

My first few months as the full-time care partner to my mom while she was still living in her own home were difficult, mostly because I didn’t have a clue what I was doing. I learned as I went, but it was a slow process, and some knowledge came too late to be of much use to us. But it may be of use to you.

When I became tired because Mom was up and ”wandering” in the night, I turned to her family physician and then to her geriatrician for help. Both of them prescribed antipsychotics (Risperdal and Seroquel respectively), about which I knew little at the time. Neither doctor could offer any other suggestions or options, even though I specifically asked for non-drug alternatives as I knew Mom didn’t like taking medication.

I’m certain things would have gone differently if I’d had a better understanding of the reasons Mom got up in the night. When you think about it, it’s not rocket science, or at least it’s not if you haven’t bought into the biomedical model that labels normal behaviour as aberrant because people have a diagnosis of Alzheimer or a related dementia.

I hope these questions will get you and others thinking about how this particular “behaviour” might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad.

20 questions to ask when people living with dementia walk around at night

  1. What do you do when your bladder is full? Do you ever wake up in the night with a full bladder or with the feeling that you need to pee? Does it sometimes happen more than once in one night?
  2. What would you do if you got up in the night because you had to pee and you couldn’t find the bathroom? Would you go back to bed? Would you keep looking for the bathroom until you found it?
  3. What would you do if you woke up in the middle of the night with an overwhelming thirst and you had forgotten to put a glass of water on the bedside table like you normally did?
  4. What would you do if you got up in the night because you were desperately thirsty and you couldn’t find the bathroom or the kitchen to get yourself a drink of water? What if you couldn’t find the light switches either?
  5. When you were a child, did you ever crawl into your parents’ bed because you felt afraid in the night?
  6. Do you, have you or did you ever let your children crawl into bed with you because they are or were afraid of the dark or of something else in the night?
  7. Do you ever have nightmares or bad dreams? Have the nightmares or bad dreams ever shaken you so badly that you wanted to get up, even though it was nighttime?
  8. How would you feel and what would you do if you woke up from a deep sleep and you were in a strange place you had never been before and nothing was recognizable and it seemed like you were alone?
  9. How would you feel and what would you do if you woke up in the night and you weren’t in your own bed? What if there were a stranger lying asleep beside you?
  10. Have you ever gotten up in the night to have something to eat because you felt hungry?
  11. What if you got up in the night to have cookies and milk because you felt hungry and you couldn’t find the kitchen? What if the place you were in was like a maze?
  12. What would you say to someone who told you it was the middle of the night when it was actually the middle of the day? What if they told you needed to go to bed in the middle of the day?
  13. How would you feel and what would you do if you lived alone and you found strangers in your house at night when you got up out of bed to get a drink of water?
  14. What would you do and how would you feel if you went to the bathroom in the night, and when you were finished you didn’t know how to get way back to your bedroom? Would you stay in the bathroom? Would you try to find your bedroom?
  15. If you were in a strange place where you were being held prisoner, and a chance arose to escape, would you take it even if it were nighttime?
  16. How would you feel if you lay down on the sofa for a nap on a sunny afternoon and the next thing you knew you woke up in someone else’s bed in the dark with pyjamas on?
  17. Have you ever gone into a room to get or do something and then forgotten what you went to get or do? What if that happened to you in the night? What if it were in a hotel?
  18. Have you or do you know anyone who has sleep walked? Do you ever get up in the night and have only a vague memory of having done so the next day? Do you sometimes feel groggy and disoriented when you wake up? Do you ever get out of bed and function like you’re on “autopilot?”
  19. Is it harder or easier to navigate in the dark than in the light? Would it be harder or easier if you forgot to put your glasses on?
  20. Is it normal for healthy adults to go to bed at 7 p.m and sleep straight through to 7 a.m the next morning? Do you sleep 12 hours a night without waking on a regular basis?

Download the PDF here.

More posts and PDFs in the “20 questions”series.

https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/

https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

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Care Partnering, Challenges & Solutions, Resources, Tips, tools & skills

30 tips to help reduce anxiety in dementia care

My Alzheimer's Story

We all get anxious sometimes. It’s normal. Often it seems that people who live with dementia experience anxiety more than others. Maybe they have more to be anxious about. Maybe they are more sensitive to stimulation or lack of stimulation. Maybe they become more anxious in particular circumstances or at certain times.

Here are 30 tips to reduce anxiety and stress levels of people living with dementia and their care partners:

  1. minimize medications (and thus their side effects)
  2. remember: everyone experiences anxiety sometimes
  3. provide extra full-spectrum light
  4. track triggers, and reduce them where possible
  5. avoid anticipating “bad behaviour”
  6. avoid caffeinated beverages
  7. avoid alcohol
  8. stick to routines
  9. remember: different things work for different people
  10. remember: what works today may or may not work tomorrow
  11. avoid agitating television (e.g. Dr. Phil)
  12. be physically active each day
  13. don’t be too physically active each day
  14. help the person living with dementia expend “excess energy”
  15. suggest an enjoyable activity
  16. remember: everything is not always “fixable”
  17. stay calm (but don’t tell them to “calm down”!)
  18. minimize loud noises
  19. minimize stimulation
  20. minimize stress
  21. go outside
  22. take a walk
  23. sit by a window
  24. offer a snack
  25. comfort and empathize
  26. agree and validate
  27. play calming music
  28. use touch
  29. remember: even the best batters strike out
  30. remember: all things pass

Do you have more tips? I’d love to hear them!

Take a short survey on behaviour here.

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Care Partnering, Resources, Tips, tools & skills

20 questions to ask yourself if you’re wondering whether or not you should visit someone who lives with dementia

My Alzheimer's Story

This week a new subscriber sent me an email, which said in part:

“My mother has dementia, and I went to see her a year ago. She got violent with me and verbally abusive. I took it personally and I haven’t seen her since. However, I have been sending cards and items of clothing in hopes to cheer her up. I was just told that she has 6 months to live, so I’m flying back down there the beginning of October.

Until I saw your [BANGS video] today I have been sitting here petrified and in total dread. Now I’m starting to feel empowered and not so scared. I feel so guilty for not seeing her this whole time. I hope our upcoming time together goes well, and we create some memorable last memories. With your advice I think I can make this work.”

I don’t know if this person’s mother lives in a LTCF or not, but the email made me think of all the people with dementia who live in LTCFs, and who don’t have visitors for whatever reason. Many who remain in their own homes or in the homes of their care partners also do not get visits from family members and friends. This tragedy made me think of 20 questions people may want to ask themselves when they wonder whether they should make the time and space to visit family members and friends who live with dementia.

Here are the 20 questions:

  1. How does it feel to feel lonely? When do I feel most lonely? What do I want when I feel lonely?
  2. How does it feel to feel loved? When do I feel loved? What makes me feel loved?
  3. How would it feel to never see my family again? How would it feel to never see my friends again? What is it like/would it be like to feel abandoned?
  4. How important is touch to human health? How important is touch to me? How important is touch to the person I know/love who lives with dementia?
  5. What does it mean to be connected?
  6. How important is connection to human health? How important is connection for me? How important is connection to the person I know/love who lives with dementia?
  7. How does it feel to be bored? What are some ways to alleviate boredom?
  8. How important is it to human health to be active and engaged? How important is it for me to be active and engaged with life? How important is it for people who live with dementia to be active and engaged with life?
  9. What are the benefits of visiting people in hospital for the people who are being visited? What are the risks?
  10. What are the benefits of visiting people in hospital to the visitor? What are the risks?
  11. How do I feel when I see someone I like/love who I haven’t seen in a long time?
  12. What might stop me from visiting someone I know/love who lives with dementia? (Make a list of as many things as you can think of.)
  13. What lies behind the list of answers to question 12? What emotions might play a role in my answers?
  14. What would happen to me if I became isolated, bored, disconnected, lonely, and unloved? What might happen to others in similar circumstances?
  15. What am I grateful for? What am I angry about?
  16. What is important to me? What is my purpose? What constitutes living?
  17. How has the person I know/love who lives with dementia impacted my life? Has my life or well-being ever depended on them? In what way?
  18. What do I want the person I know/love who lives with dementia to know about the way I feel about them? Have I told them? When and how? Have I shown them? When and how? What did that feel like for me? If I haven’t told them, why not?
  19. Is it important that the person I know/love who lives with dementia recognizes me? If yes, who is it important to?
  20. If the person I know/love were to die tomorrow, would I have any regrets?

Sometimes questions are more powerful than answers; I hope these are helpful. I think it’s also important to remember that we can’t control others’ behaviour and some people will choose to distance themselves no matter how much we might wish them to be involved (more on that here).

Links to other sets of 20 questions here.

https://myalzheimersstory.com/2020/02/16/20-questions-to-ask-yourself-when-someone-who-lives-with-dementia-wants-to-go-home-or-tries-to-escape-wherever-they-are/

https://myalzheimersstory.com/2016/10/14/20-questions-to-change-the-direction-of-dementia-aggression/

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Advocacy, Life & Living, Resources

8 principles of high-quality care and support that people who live with dementia and people who don’t live with dementia all deserve

My Alzheimer's Story

Who knows better what they need to live with a disease, a condition, a problem, a challenge, a difference than those who live with it?

Nobody, that’s who.

The World Dementia Council (WDC) is an international charity. It consists of 24 senior experts and leaders drawn from research, academia, industry and NGOs in high-, low-, and middle-income countries, and most important, it includes two leaders with a personal dementia diagnosis.

In May 2017, the WDC published a Global Care Statement Calling For More Care and Support For People Living With Dementia. This is what it said in part:

“All persons affected by dementia – those living with the diseases that cause it, their care partners, and their family and friends – have a right to receive the highest quality care and support possible to meet their needs. They have the human right to be treated with dignity and respect. And they are entitled to full and effective participation and inclusion in society. These rights transcend national boundaries and cultures.”

The statement included eight principles of high-quality care and support, the short forms of which are listed below, and which, in my view, apply to everyone, not just people who live with dementia. I’ve put brackets around the bits that could be taken out to make this principles universally applicable:

1) Individuals receive a timely and accurate diagnosis; and are told of that diagnosis
2) People [living with dementia] are entitled to respect and dignity
3) Communities are inclusive of people [living with dementia]
4) Care is person- and relationship-centered
5) The provision of person-centered care is based on continuous assessment and individualized care planning
6) People [living with dementia and their care partners]  are involved as active participants in [their own] care planning
7) Medical and care professionals have adequate knowledge [of all aspects of dementia]
8) Care coordination and collaboration occurs between all care providers

Equally important is the WDC statement below that calls for collaboration between all those involved in care whether they be “professionals,” family care partners, or other care providers. I particularly like the fact that monitoring and evaluating care and support is specifically mentioned as I feel this is the only way to stop the neglect and abuse of people who live with dementia in their own homes as well as in long-term care facilities.

See the WDC care statement and a more detailed explanation of each of the eight principles here.

The principles also express the need for medical and care professionals to be knowledgeable of all aspects of dementia and to work across disciplines to ensure a holistic approach to disease management; and for care coordination and collaboration to occur between all care providers, including in monitoring and evaluating the care and support provided. Yes. All of that makes sense to me.

Bravo WDC for identifying what people who live with dementia deserve, and what the rest of us who don’t yet live with dementia deserve as well!

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