Challenges & Solutions, Resources, Toward better care

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.

Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.

Dementia care partners everywhere know that to be a fact. We have learned what it takes to survive and thrive on a day-to-day basis – sometimes even a moment-to-moment basis! Unbelievably, many of us have discovered joy and inspiration along the way.

We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia
  1. Love
  2. Hope
  3. Resilience
  4. Courage
  5. Determination
  6. Ingenuity
  7. Creativity
  8. Music
  9. Connection
  10. Caring
  11. Compassion
  12. Relationships
  13. Interdependence
  14. Empathy
  15. Faith
  16. Curiosity
  17. Laughter
  18. Kindness
  19. Generosity
  20. Ferocity

This post was inspired by Jamie Tworkowski, who blogs here.

17 links to the “other side” of dementia

a prayer for those who care worldwide

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Challenges & Solutions, Resources, Toward better care

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are

Wanting to “go home” is a desire often expressed by people who live with Alzheimer disease and/or other types of dementia, even when they are in their own homes. Not being able to fulfill a loved one’s desire “go home” can be incredibly frustrating for care partners who would certainly take their family member living with dementia “home” if only they could.

In the early days of being a care partner to my mom, I didn’t know what to do when she said “I want to go home.” She would have her little bag packed with random stuff, and be ready to go out the door.

“But Mom, we are home,” I would say. “Look, Mom, this is your furniture, these are your carpets, those are your pictures on the wall. We are home!”

When she wasn’t convinced, the conversation would get more heated as we stood arguing in the kitchen, den, or living room of her big red brick house on the hill, until I sometimes heard myself yelling at her in exasperation “Where is home then, if it’s not here?”

I soon learned that arguing with her didn’t work. It was a waste of time and energy. It left both of us emotionally drained, and no further ahead. Eventually, I found different solutions to “I want to go home,” as well as other challenges. One solutions was to put myself in her shoes, to see her reality rather than my own.

What I discovered through self-reflection, observation and my own research is the behaviour we find challenging in people who live with dementia is behaviour we would likely exhibit ourselves in similar circumstances.

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are
  1. When you find yourself in an environment that makes you anxious or uncomfortable, what do you do?
  2. How would you feel if you were kidnapped? What would you do?
  3. If you found yourself in a place that that was too hot, too cold, or too noisy, what would you do?
  4. If were taken from your home by people you didn’t know, and put in a strange place full of crazy people, what would you do?
  5. Where do you want to go or be when you feel tired, overwrought, out of sorts, out of place, lonely, scared or overwhelmed by everything?
  6. How important is it to your well-being to feel like you belong somewhere? Where do you feel your greatest sense of belonging?
  7. How long can you stay in one place without wanting to go somewhere else? Hours? Days? Weeks? Months? Years?
  8. If someone locked you in your house and told you that you could never leave, how would you feel?
  9. As a child, did you ever fall and hurt yourself while playing outside? Where did your instinct tell you to go for safety and security?
  10. Have you ever run away from a problem, a place or a situation? When? Why?
  11. Do you ever feel like you just have to leave when things get too much for you to bear?
  12. Do you sometimes just want everything to be other than the way it is?
  13. Do you take holidays and vacations away from home? How does it feel to be away? How does it feel to be away when everything seems to go wrong?
  14. How do you feel when you return home after a holiday, vacation or long visit with friends or family?
  15. In general, where do you prefer to be most of the time: in your own home or someone else’s home?
  16. In general where do you feel most comfortable and in control: in your own home or someone else’s?
  17. What feelings does the word “home” evoke for you?
  18. Given the choice, when you feel tired or sick, would you rather be at home or somewhere else?
  19. Do you sometimes long to be somewhere other than where you are?
  20. When do you most appreciate being “at home” wherever that is or whatever it means to you?

It’s no wonder people living with dementia want to go home…

13 expert tips to help with “I want to go home.”

“wandering” is not a symptom of dementia

 

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Advocacy, Challenges & Solutions, Toward better care

stories of family members being banned and restricted by long-term care facilities make canadian national news

On February 26, 2015, I received a registered letter from the facility in which my mom had resided for two and a half years requesting that I limit my visits to my mother to between the hours of 1 p.m and 3 p.m. on Monday, Wednesday, Thursday, Friday, Saturday and Sunday, and from 2:30 p.m. to 4:30 p.m. on Tuesdays.

Mom loved to have afternoon tea in the living room with me. Tea was from 3 p.m. to 5 p.m. The restrictions meant we would only be able to have tea together once a week on Tuesdays instead of every day as we had been accustomed to do. She also got a great deal of joy from Thursday morning sing-alongs; we would no longer be able to attend those either.

Furthermore, Mom was normally in a sedated antipsychotic sleep each day until about 3 p.m., which meant she would be sleeping during the time I was “allowed” to visit. I asked for the hours to be changed. My request was refused.

Denying family members access to the people they love is a form of abuse. The abuse and the number of people who are subjected to it in Canada is finally coming to light because of advocates like me, Mary, and Tanni. See our stories in the videos and links below.

The story ran on the CBC’s website, and also topped the soft news portion of CBC’s The National on Friday, November 22, 2019.

Please contact Marketplace if you have a similar story to share.

four years later is too late for my mom. but it’s not for others.

3 more reasons family and friends of people who live with dementia in long-term care facilities don’t report abuse and neglect

6 reasons why staff in long-term care facilities don’t report incidents of elder abuse and neglect

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

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Advocacy, Challenges & Solutions, Toward better care

7 reasons why physicians continue to prescribe antipsychotic drugs to people who live with dementia when they shouldn’t

There is irrefutable evidence that prescribing antipsychotic drugs to people who live with dementia does more harm than good in most cases. These drugs are NOT approved for use in dementia care in most countries.

So why are physicians still prescribing these medications to people who live with dementia?

Because physicians:

  1. are often pressured by care partners, family members and/or care workers and nurses to provide a “magic pill” that will fix situations that care partners, family members and care workers find challenging
  2. don’t know any better and/or are irresponsible
  3. don’t understand that the behaviour family members and care workers find challenging is, in most cases, NOT caused by dementia but rather by factors anyone would find stressful and distressing
  4. aren’t aware that non-pharmacological interventions are more effective than drugs in changing behaviour of people living with dementia that dementia care partners and care workers find challenging
  5. don’t have time to properly counsel dementia care partners, care workers and others in effective non-drug interventions
  6. don’t fully understand the negative impact and harmful side effects that antipsychotic drugs have on people who live with dementia
  7. believe (erroneously!) that they are doing the right thing

#BanBPSD #educatecarepartners #educatephysicians #educatenurses #educatecareworkers

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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

40+ seroquel side effects

 

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Advocacy, Challenges & Solutions, Inspiration, Toward better care

australian care worker wendy carr proves you can teach an old nurse new tricks

Sometimes I lose hope that dementia care will ever change. It often feels as if we’re going backward instead of forward. Then someone such as Wendy Carr inspires me and renews my hope.

When Wendy began commenting on the My Alzheimer’s Story’s Facebook page in 2018, I was struck by her practical wisdom (see one of her quotes below). It was clear from her comments that she worked in a long-term care facility, and that she was keen to create change. I wanted to know more about her, because we need people like Wendy “on the ground,” changing the system and making a difference in the lives of people who live with dementia in care facilities right now.

I connected with Wendy, and asked her to tell me more about herself; here’s what she wrote:

I was a Registered Nurse (RN), with experience in Theatre, Ophthalmology, Aged Care and Psychiatry. I left work to care for my sister, then my mum, and then, sadly, my husband. They all wanted to die at home, not in a hospital or palliative care setting. We were able to do this with a huge amount of assistance from Little Haven, a not-for-profit we have in my area. It was a privilege for me to care for my family members at home until they died, although it was emotionally very difficult – much more so for me than if they had been in a hospital or care home. For people to die at home is almost taboo here in Australia, so those who wish to go that route have little support. My Welsh background views death differently I think.

‪Because I was out of paid nursing for so long while caring for my family members, I would have had to retake full training to become registered again. Financially, with three children, that was impossible. So I returned to Aged Care as a Nursing Assistant, and was offered a position in the dementia unit. It is brilliant work, albeit at poor wages. One of the things I most appreciate about being a nursing assistant is that it’s the best place to initiate change. I also love the fact that I work so closely with the residents rather than attending to RN duties that often preclude the building of the vitally important relationships with the people we care for. I could return to university now, but I’m having way too much fun in this assistant role.

I work in a large one-hundred-and-sixty bed, purpose-built facility, which is amazing for a small country town in Queensland, Australia. The facility is set in a beautiful bush environment, and is transitioning from a task-oriented to a person-centred care model. Moving to understand the person’s reality is a hard concept for some carers to grasp. Many still believe any and all behaviours are caused by “the dementia” and cannot be altered or understood, so meds or restraints are still “go to” options when staff members are challenged by the behaviour of some residents. Australia has new laws to address the use of chemical and physical restraints in aged care, which is going to be a huge breakthrough. That said, it’s relatively easy to find loop holes. As with most laws, time will tell. I must admit I am impatient with the slow pace of change.

‪I have worked at this centre for seven years. It is a not-for-profit, and doing an amazing job. I prefer working night shifts. Although there is traditionally less staff at night, it can be the best time to build close relationships with residents. Nighttime “behaviours” require a complete reset of our own headspace!

‪In short, person-centred care (or wholistic nursing as I call it), is finally making inroads, and practices are starting to change. I’m old, but I’m so glad this shift is happening because my desire to provide this kind of care is one of the reasons I became a nurse forty years ago.

Your page is so helpful in redefining attitudes especially as you had first-hand experience caring for your mother. You have helped me to realise I’m not completely mad in thinking we can do this better. Together, we can create a more positive experience for people who live with dementia, care workers and family care partners.”

We need more advocates such as Wendy Carr and Joanna LaFleur in dementia care to create new care models from the ground up! Thanks Wendy and Joanna for helping to change the face of dementia care worldwide.

7 ways to improve dementia care in less than three minutes

7 paths to better dementia care

20 paths to dementia care homes away from home

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Care Partnering, Challenges & Solutions, Real life, Resources

5 things that may help when you and/or your care partner feel lost and confused

During the first two years Mom was in dementia jail, she was still able to walk. I would often bring her to my house (which was a three-minute drive up the hill), for supper, a music session or just to hang out.

We would talk about everything from soup to nuts. Sometimes our conversations were light and airy, sometimes they were emotional and difficult. When they were the latter, I made a special effort to be with her in whatever space she was in so we would be connected.

My life experience has taught me that some stuff can’t be fixed, no matter how hard you try to make it better. And as a care partner, I learned that people who live with dementia are human beings with feelings just like the rest of us. They struggle just like the rest of us. They want to succeed just like the rest of us.

When Mom and I struggled, we supported each other. We found these five things helped us get through tough times (maybe they’ll work for you too):

  1. Hold hands
  2. Cry together
  3. Do what you believe is the right thing
  4. Do the best you can
  5. Share chocolate

Here’s a real life example / demonstration from a conversation Mom and I had on April 10, 2013. I had brought her to my place for supper. We were struggling, and we didn’t know what to do:

we all go through rough patches. here’s one thing that can help us get to the other side.

doing the right thing when everything seems wrong

Take my short survey on behaviour here.

Challenges & Solutions, Inspiration, Music, Resources, Toward better care

they took away his cutlery and gave him drumsticks – he loved it!

Yes, there are solutions to addressing situations and behaviour that care partners and care workers find challenging. In most cases finding a solution involves thinking out of the box, which is what the staff at this gentleman’s care home did. He wanted to tap and clap, which people around found disturbing. Staff were stumped initially, but then they came up with an innovative solution as shown in the video below.

Here’s the explanation behind the video, which I found on the Center for Applied Dementia Research’s Facebook page:

This is an outstanding application of a “Responsive Behavior” Assessment. Our partners at Mt. Bachelor Memory Care sent us this video with the following message: “This individual has a habit of clapping his hands or rapidly tapping silverware on the table. Staff were making him wear gloves and taking his silverware away and replacing it with plastic, this caused him to disengage. I worked with the team using the form and this is what we came up.” [Shared with permission]

The innovative team at Mt. Bachelor looked at an individual’s behavior, understood it as a response to a need, and found an alternative to meet that need which is appropriate and meaningful. Rather than allowing the person to retreat or disconnect, they adapted the environment to everyone’s benefit. Well done!

Frontier Management‘s Mt. Bachelor Memory Care is a Gold Credentialed Montessori Inspired Lifestyle Community in Bend, OR. The commitment and care shown here demonstrates why they deserve that award.

The “form” they refer to above was developed by the Center for Applied Dementia Research, and is part of their training in the Montessori approach to dementia care.

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

5 things I never knew until I sang with my alzheimer mom

10 tips to make the most of music in dementia care

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Challenges & Solutions, Life & Living, Toward better care

20 actions to foster and maintain dignity in dementia care homes

I was thrilled to learn that Australian dementia care advocate, author and activist Kate Swaffer included an excerpt from my “open letter to the dementia care community worldwide” in her statement to the Australian Royal Commission on Aged Care Quality and Safety (read the full statement here).

Kate’s comprehensive and thought-provoking statement comprises a wealth of information including a list of 10 Dignity in Care Principles, which Kate originally published on her blog in 2014.

Inspired by her list, I added ten more items to create twenty actions that long-term care providers and their staff could implement to foster and maintain the dignity of people living with dementia (PLWD) who reside in their facilities.

  1. Maintain zero tolerance of all forms of neglect and abuse
  2. Support people PLWD with the same respect you would want for yourself and/or members of your own family
  3. Treat each person living with dementia as an individual by offering a personalised service
  4. Address PLWD using their preferred name, title or other form of address
  5. Enable PLWD to maintain the maximum possible level of independence, choice, and control
  6. Encourage PLWD to do what they enjoy, whatever it may be, and give them the means to do it
  7. Listen when people express their needs and wants, especially when they uses actions to communicate rather than words
  8. Respect people’s privacy
  9. Provide appropriate, well-designed living environments that are comfortable, easy to navigate and welcoming
  10. Ensure people are able to complain without fear of retribution
  11. Engage with family members and carers as care partners
  12. Assist PLWD to maintain confidence and positive self esteem
  13. Act to alleviate loneliness and isolation
  14. Avoid the use of physical and chemical restraints
  15. Provide interesting, stimulating and appropriate things for PLWD to do
  16. Give PLWD opportunities to contribute and lead meaningful lives
  17. Treat PLWD like people, not like objects, or as if they are “lesser than”
  18. Connect with PLWD as fellow human beings
  19. Focus on what PLWD can do, not on what they can’t
  20. Avoid blaming, shaming and taming!

Preserving dignity is part of respecting human rights. We need to ensure it happens across the board.

20 paths to dementia care homes away from home

7 ways to improve dementia care in less than three minutes

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Care Partnering, Challenges & Solutions, Toward better care

7 ways to transform dementia care grief and suffering into joy and healing

Are you a dementia care partner who lives in a world full of grief, loss and suffering? What if you didn’t have to be in that dark, depressing place? What if you could transform your suffering into healing? What if you could release your feelings of grief and loss?

Moreover, what if changing your world was simply a matter of changing your perspective? Would you choose to do it?

When I chose to reframe the way I saw dementia and the people who live with it, I completely changed my experience as a care partner. Others have done the same. Here’s an excerpt from an email I received from FK, a long-time follower of MyAlzheimersStory.com:

Susan,

I really need to thank you so so much for changing my perspective on what was happening to my parents as they both lived with dementia. I have responded to your blog from time to time, mentioned that I was caring for my parents, both of whom had Alzheimer disease, and shared my experience about being with my sister when she died when your mom was approaching that point.

I had moved to [Some Little Town] from [A Big City] in 2011 when my parents began to lose their abilities to live independently, and I eventually became a full-time care partner.  For the first few years after I noticed the first signs of memory loss, I was stuck in that  intense grieving phase and could only see the losses and mourn what felt like my parents disappearing before my eyes.

But after discovering your site/blog and following it, I gradually learned to see that they were still there, still my parents, still loving and able to share many things with me.  My focus changed from mourning each new loss and grieving what lay ahead in the future, to living with them in the moment and trying to share as many moments of joy as possible.  That made a world of difference.  I was able to love them and keep sharing laughter and love until they died (my dad on April 02nd, 2017 after a long, slow decline and many false alarms; my mother very unexpectedly the very next day, April 03rd, 2017.  Thanks to you, I look back on those years as, in many ways, a happy time despite all the difficulties, frustrations, fears and tears.

I lost a legal bid to get control of my mother’s care in February 2014. Shortly thereafter, I launched MyAlzheimersStory.com. I wanted to share my journey and learnings as a care partner, and help others avert some of the challenges and pitfalls I had faced.

As I learned more about Alzheimer disease and other illnesses that cause dementia, I also came to realize we can radically change our experience of dementia and the people who live with it by reframing the way we see it and them. Helping people transform their experience from suffering to healing has become an integral part of my advocacy–one that’s working as FK’s email demonstrates!

Here are seven ways you can reframe and change your dementia care experience:

  1. Focus on what remains rather than what has been lost
  2. Look for potential rather than staying stuck in deficit
  3. See the person, not the disease
  4. Understand that people who live with dementia are still people, not “empty shells”
  5. Understand that people who live with dementia have the same needs we all have
  6. Create opportunities to experience joy and happiness
  7. Find things to laugh at instead of things to cry over

I did it. FK did it. You can do it too.

17 links to the “other side” of dementia

do you see what i see?

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

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Care Partnering, Challenges & Solutions, Toward better care

30 reasons people living with dementia might decline to eat

Some people say there are no stupid questions. I beg to differ. I regularly see stupid questions, or perhaps ignorant questions would be more accurate, being asked about people who live with dementia.

Often the questions come into my inbox from Quora. I answer the occasional one, like this query from a grandson for example. Most I ignore because the answers may be easily found with a quick google search.

Then there are the questions such as this that make me hot under the collar: “What does it mean when a person with dementia refuses food?” To which I couldn’t help but answer pointedly: “Oh for heaven’s sake. People with dementia are PEOPLE. Their behaviour is NORMAL. Ask yourself why you might refuse food, and you will have the answer to your question.”

I went on to give a list of thirty potential reasons someone living with dementia (or someone NOT living with dementia for that matter) might decline to eat:

  1. He is not hungry
  2. She doesn’t care for the food she’s being offered
  3. He doesn’t like the way the food is presented (e.g. the colour, the texture, the fact that it’s pureed, or not, or it doesn’t even LOOK like food)
  4. She doesn’t like the smell of the food
  5. He doesn’t like the taste of the food / the food tastes bad.
  6. The food is too hot or too cold
  7. She is sick
  8. She is tired and doesn’t feel like eating
  9. He is in pain
  10. Her tummy is upset, she has cramps
  11. She’s having trouble swallowing and she’s afraid she might choke
  12. He’s so sedated with drugs that he’s not interesting in eating or he physically can’t eat
  13. She doesn’t remember how to use the utensils, and she doesn’t want to be impolite and use her hands
  14. It’s not his usual mealtime; it’s too early or too late
  15. Someone is telling her / giving her an order to eat and she hates people telling her what to do
  16. Someone is trying to feed him, when he is perfectly capable of feeding himself
  17. She needs help to eat, but she’s too afraid to ask or there’s no around to help her
  18. It’s too noisy / it’s too quiet
  19. She’s tired of eating the same thing all the time
  20. The place he’s in is unfamiliar; he prefers to eat where he usually eats
  21. She prefers to eat what she wants, and no one asked her what she wanted
  22. The lights are too bright / the lights are too dim.
  23. He feels constipated / she needs to go to the bathroom
  24. She is surrounded by strange people and she wants to go home and eat with her family
  25. She wants to sit with her friend at another table, but she’s not “allowed”
  26. His dentures don’t fit properly and it’s hard for him to chew
  27. She doesn’t seem to have her dentures anymore, and she can’t eat properly without them
  28. Whenever he eats, he gets some kind of adverse reaction, so he’s refusing to eat to avoid the reaction
  29. She saw someone crush pills into her food, and she doesn’t want to take the pills
  30. He’s at the end of life, and I doesn’t feel like eating anymore

No doubt there are other reasons I haven’t thought of. The important thing is to remember that people who live with dementia are just like the rest of us. They are human beings with thoughts, feelings, needs, likes and dislikes.

If we took the time to ask ourselves smart questions about why people who live with dementia behave as they do, we wouldn’t need to ask stupid and ignorant ones!

And BTW, all of this is yet ANOTHER reason we need to #BanBPSD.

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

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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

“wandering” is not a symptom of dementia

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