Family, Poetry, Real life

6 priceless gifts you could give people living with dementia (and everyone else for that matter!)

These gifts are inexpensive (they don’t cost dollars and cents, so everyone can afford them), and yet priceless (because of the fact they can’t be bought, and must be given from the heart). Even better, they can be gifted all year round!

Please consider giving one, several or all of these gifts this year (and always) to people who live with dementia in your family, your community and around the world.


You could treat people who live with dementia like the human beings they still are no matter what “stage” of the condition they are living with. You could treat them like adults, not children. You could respect their wishes, wants and desires. You could believe their lives still have value, and you could demonstrate that belief in the way you interact with them.


You may have been told that people who live with dementia become empty shells. But that’s not true. They are people with rights and needs just like the rest of us, and they need to be loved just like the rest of us do. Share your love.


You could give them the most precious gift of all: the gift of time. Carve out a space in your busy life and go to visit someone living alone, or someone who rarely gets visitors even if they are living in community. Once you get there, sit and stay awhile. You don’t have to do anything – just being with someone is often enough.


People who live with Alzheimer’s disease and other dementias are widely misunderstood, stigmatized and marginalized. If each and every one of us took the time to educate ourselves and to really understand what’s going one with people who live with dementia, and what causes them to behave the way they do, we would all be a lot better off. If you haven’t already begun learning, start educating yourself now.


Imagine what it might be like to be experiencing brain changes in which your memory and your ability to understand the world are shifting in ways that make it hard for you to navigate reality. Imagine what it might be like to experience stigma and isolation, to have other people take control of your life. Imagine what it might be like to walk in their shoes, and then give the people you interact with who are living with dementia your compassion and understanding.


People who live with dementia are often treated like objects, like pieces of furniture, as if they are less than human. Many are unable to speak up for themselves. We need to be their voice. We need to ensure that they are treated with dignity, and that they get the care they have a right to. When you see people who live with dementia being neglected, abused or treated in ways they shouldn’t be, SAY SOMETHING! And then keep advocating until things change.

These are gifts that money can’t buy, but that we all have the capacity to give.

Please give generously.

13+ needs we share with people who live with dementia

alzheimer annie invites you in

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

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Hope, Joy, Love

exploring autism spectrum disorder and asperger’s syndrome

No, it’s not a typo. The headline does indeed read Asperger Syndrome and not Alzheimer Disease. And no, the focus of this blog is not changing — this post is a bit of an anomaly.

Lilly*, one of the first and most loyal followers of is an “Aspie.” When I recently befriended someone who, like Lilly, was diagnosed with autism spectrum disorder (ASD or Asperger’s syndrome) later in life (i.e. in his forties), I wanted to know more about the condition so I could be as supportive of my new friend as possible. Understanding is key to communication, and, as we had been collaborating on a project, I felt the more I knew about being an Aspie, the better I would be able to engage him, and the more successful our work together would be. Sadly, the project will now never see the light of day.

Remarkably, as I dug into the information, I recognized the signs of high-functioning ASD in myself, and realized I might easily be considered on the edge of the high functioning end of the spectrum.

When I shared this with Lilly on Messenger, she quickly replied:

“I too believe you could be, you have many high-functioning characteristics, and you troubleshoot with different skill set than “non neurodiverse”, from my observation over the past few years.”

I began my research by revisiting Temple Grandin‘s TED201O talk The World Needs All Kind of Minds, which I had found fascinating when it was first released, and which delivered additional insights on second viewing. Grandin lives with autism, has a doctorate, and is one of the top scientists in the humane livestock handling industry; a highly rated 2010 movie about her life, starring Clare Danes, won a Golden Globe award. She is also the co-author of this groundbreaking book: The Autistic Brain: Thinking Across the Spectrum.

Here is her 2010 TED talk:

This short CNN piece combines live interview with clips from the movie:

I found one of the best “basics” articles on the Autism Speaks Canada website. The article points out that “Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Diagnosis tends to center primarily on difficulties with social interactions.” Other information I found suggests marital issues are frequently among the diagnosis drivers. This excellent Psychology Today article outlines a number of specific, practical strategies that may help get and/or keep a marriage with an Aspie on track. This one in particular struck me:

“Understanding that [Asperger Syndrome] is a biologically-based, neurological difference vs. a psychological mental disorder is key. Learning about [Asperger Syndrome] is important to sort through what challenges are [Asperger Syndrome] based and what are just regular marriage issues. Books, movies, articles, and seminars can help the both partners better understand [Asperger]. Due to its complex nature, learning about [Asperger Syndrome] is lifelong.”

I also found this wonderful video:

There’s a great article on Asperger and creativity here, and another interesting TED talk called Asperger’s: Not Being Afraid Anymore here, and one on meds here. More on girls with autism spectrum disorder here.

People with Alzheimer Disease are often stigmatized and seen as “less than” or deficient in some way. I wrote a poem to help change that mindset. Aspies are similarly stigmatized, and often told there’s something “wrong” with them. There’s nothing wrong with people who are different. They are simply different. So I also wrote a poem about what it might be like for an Aspie to be labeled and stigmatized, from an Aspie perspective. Not surprisingly, I seem to have a pretty good grip on that.

Doing this research was helpful and enlightening for me. I hope it is for you too.

*Not her real name.

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Inspiration, Joy, Life & Living, Love

the story of the cracked pot and the flowers she grew

The parable of the cracked pot, which I first came across more than a decade ago, is one of my favourites. It’s all about the flaws in perfection and the perfection in flaws, as well as a reflection on reframing our own imperfection. It recently occurred to me that revisiting the story might also be an interesting way to reframe the stigma associated with aging and dementia. I’ve re-written the parable (below) with that goal in mind. 


Once upon a time, there lived a servant who fetched water every morning for her mistress. She carried it in two large clay pots that she hung on either end of a pole, which she bore across the back of her neck and shoulders.

The pots were smooth and rounded, and perfectly suited to the task of holding the clear, clean water from the river. They were identical except for the fact that one was older than the other. After the long dusty walk up from the river, the water bearer emptied the clay pots into storage vessels at her mistress’s house.

One day, the water bearer saw that the older of the two pots had developed a crack through which a little water dripped. Over time, other small cracks appeared, and more and more water leaked out as the servant made her way up the hill from the river to the house. It wasn’t long before the cracked pot was only ever half full by the time the water bearer arrived at the kitchen door.

“Throw out that old cracked pot, and get a new one,” the cook scolded the water bearer. “Soon it won’t be able to hold any water at all! It’s broken and can’t be fixed, and it’s only half as good as the other.”

The pot that remained crack free seemed to swell with pride as the cook shouted. The water bearer said nothing. She emptied the old pot’s contents into a barrel, and then placed it gently back in its rope sling, ready for the next day’s journey to the river.

The poor old pot was ashamed of her deficits — miserable that she could accomplish only half of what she used to. That night, she lay next to her clay companion who hadn’t talked to her since the cook’s harsh words that morning, and she wept because she was so much less than she had been.

“I’m no good to anyone anymore, just like the cook said,” the old pot thought as she cried, and the pain caused her cracks to crack open a little wider.

The next day when they got down to the river, the old pot plucked up every ounce of courage she had and spoke as the water bearer dipped her into the fast-flowing current.

“I am ashamed of myself, and I want to apologize to you,” she said.

“Why?” replied the bearer. “What are you ashamed of?”

“I used to be perfect and appreciated, but now I’m old and cracked and worthless, just like the cook said,” the words rushed out as swiftly as the river ran. “Because of my flaws I’m a burden rather than a help. You do all of the work, and I’m no use at all.”

But the water bearer was full of compassion, and she loved the cracked pot, “Look at the beautiful flowers on the way back to the house. I think they will cheer you up,” she said.

Indeed, as the water bearer carried her up the hill, the old pot paid special attention to the flowers. She had been so preoccupied with her cracks and flaws that she had failed to notice their beauty before. She soaked in the warmth of the sun on her curves, and swayed gently as the water bearer trudged along the path. She even felt as if her cracks might be closing slightly.

But at the end of the trail, once again half of her water had leaked out, and she returned to despair.

“I’m so sorry,” she cried.

“Did you notice the flowers only grow on one side of the path?” the water bearer questioned. “I planted seeds on your side when I first noticed you had a crack. When you cracked a little more, I planted more seeds, and as I carry you up to the house you water them and the flowers they produce every morning.”

“In the afternoon, I pick the flowers for my mistress’s table. Without you being just the way you are, she wouldn’t have this beauty to grace her house, and I wouldn’t be able to enjoy it as I walk down to the river and back.”

With that, the old cracked pot never felt “less than” or worthless again. Instead, she felt loved and useful. She fulfilled her destiny, and relished the journey back and forth to the river every day. She took pleasure in watering the flowers, and watching them grow. Eventually, the cracks weakened her to the point that she broke into pieces, which the water bearer buried on the side of the path so the flowers might wrap their roots around the clay for stability and strength.

Read a version of the original parable here.

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Resources, Tips, tools & skills, Toward better care

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

When people who live with alzheimer disease and other dementias (PLWD) feel threatened or afraid, they react just like most other living things with one of three responses: fight, flight, or freeze. These normal responses are often pathologized in PLWD. When they “fight” back, it’s called “being combative,” or “aggressive behviour.” When they try to flee, it may be labeled as “wandering,” or “exit seeking behaviour.” This unfortunate labeling often leads to PLWD being medicated and/or sedated instead of understood.

How can dementia care partners help reduce anxiety and anger, and thus the responses they generate? I talk about five proven strategies here. Likewise, love, support and compassion can help defuse a crisis situation, calm troubled waters, and help create positive outcomes while averting unwanted ones. In fact, understanding and appreciation (when we mean it of course!) can help lay the foundation for better relationships with everyone, whether they live with dementia or not.

Here are 30 specific things (and lots of additional ideas) care partners and care workers might say to help people who live with dementia feel good about themselves and their relationships:

1) I love you
2) I understand that you feel angry/anxious/afraid/unhappy/sad/hurt/trapped/confused/upset/lost
3) You have a right to feel angry/anxious/afraid/unhappy/sad/hurt/trapped/confused/upset/lost
4) This is maddening/hard/scary/upsetting/unfair/difficult/confusing
5) You are right / I agree
6) It’s not your fault
7) I’m sorry
8) You are special to me
9) I see you and I hear you
10) You’re not alone
11) You don’t have to be afraid
12) I’m proud of you
13) I have confidence in you
14) I will hold your hand
15) You are important to me
16) Your life is precious
17) The world is a better place with you in it
18) I see your spirit shining
19) I’m lucky to have you
20) I want to learn from you
21) You are beautiful
22) You are one of the best things in my life
23) I value the time we spend together
24) Your opinion is important, and you count
25) I feel good when we’re together
26) You have taught me many things
27) I’m grateful for all you have done for me
28) I love the way you: live your life / talk / sing / notice small things / smile / laugh / look / tell jokes / cut carrots / butter bread / compliment others / take care of yourself / take care of others / share your time with me / tell stories about your life / take pleasure in small things / want the best in life / keep going / fight for your rights / speak volumes in silence / make your voice heard / assert yourself / are kind to others / have lived your life / take the bull by the horns / don’t give up
29) I enjoy: holding your hand / singing with you / preparing meals with you / listening to music with you / just being with you / walking with you / seeing you smile / hearing your voice / watching the birds with you / picking flowers with you / hearing you tell stories / sharing memories with you / being inspired by you / witnessing your courage / spending time with you / helping you live as you want to / your sense of humour / dancing with you / living with you / appreciating good days with you / helping you / seeing you thrive / the sound of your voice / the touch of your hand / the look in your eye / our relationship
30) I’m glad: we’re spending time together / you are still with me in this world / you are my… (mother/father/brother/sister/husband/wife/daughter/son/friend) / we know each other / you love me / you are in my life / we share joyful moments together / we overcome challenges together / we have each other / we’re connected
30) You are: amazing / beautiful / smart / my hero / helpful / wise / clever / funny / huggable / lovable / my friend / inspiring / courageous / brave / determined / strong / precious to me / capable / loving / patient / feisty / perceptive / insightful / knowing / gentle/ perfect just the way you are

Suggestion: use the words, attributes and experiences that have the most meaning to you and your care partner/client.

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Resources, Tips, tools & skills, Toward better care

5 ways to help people who live with alzheimer not ‘fade away’


Alzheimer’s disease has an unusual distinction: It’s the illness that Americans fear most — more than cancer, stroke or heart disease. The rhetoric surrounding Alzheimer’s reflects this. People “fade away” and are tragically “robbed of their identities” as this incurable condition progresses, we’re told time and again.

Yet, a sizable body of research suggests this Alzheimer’s narrative is mistaken. It finds that people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life, overall, until the illness’s final stages.

They appreciate relationships. They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.

“Do our abilities change? Yes. But inside we’re the same people,” said John Sandblom, 57, of Ankeny, Iowa, who was diagnosed with Alzheimer’s seven years ago.

Dr. Peter Rabins, a psychiatrist and co-author of “The 36-Hour Day,” a guide for Alzheimer patients’ families, summarized research findings this way: “Overall, about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe disease.”

“I’ve learned something from this,” admitted Rabins, a professor at the University of Maryland. “I’m among the people who would have thought, ‘If anything happens to my memory, my ability to think, I can’t imagine anything worse.’

“But I’ve seen that you can be a wonderful grandparent and not remember the name of the grandchild you adore. You can be with people you love and enjoy them, even if you’re not following the whole conversation.”

The implication: Promoting well-being is both possible and desirable in people with dementia, even as people struggle with memory loss, slower cognitive processing, distractibility and other symptoms.

“There are many things that caregivers, families and friends can do — right now — to improve people’s lives,” said Dr. Allen Power, author of “Dementia Beyond Disease: Enhancing Well-Being” and chair for aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada.

Of course, the final stages of Alzheimer’s disease and other types of dementia are enormously difficult, and resources to help caregivers are scarce — problems that shouldn’t be underestimated.

Still, up to 80 percent of people with dementia are in the mild and moderate stages. Here are some elements of their quality of life that should be attended to:

1 ) Focus On Health

One notable study analyzed lengthy discussions between people with dementia, caregivers and professionals at six meetings of Alzheimer’s Disease International, an association of Alzheimer’s societies across the world.

Those discussions emphasized the importance of physical health: being free from pain, well-fed, physically active and well-groomed, having continence needs met, being equipped with glasses and hearing aids and not being overmedicated. Cognitive health was also a priority. People wanted “cognitive rehabilitation” to help them learn practical techniques for promoting memory or compensating for memory loss.

Up to 40 percent of people with Alzheimer’s disease suffer from significant depression, and research by Rabins and colleagues underscores the importance of evaluating and offering treatment to someone who appears sad, apathetic and altogether disinterested in life.

2 ) Foster Social Connections

Being connected with and involved with other people is a high priority for people with dementia. Based on research conducted over several decades, Rabins listed social interaction as one of the five essential elements of a positive quality of life.

But fear, discomfort and misunderstanding routinely disrupt relationships once a diagnosis is revealed.

“The saddest thing that I hear, almost without exception, from people all over the world is that family, friends and acquaintances desert them,” said Sandblom, who runs a weekly online support group for Dementia Alliance International, an organization for people with dementia that he co-founded in January 2014.

3 ) Adapt Communication

Not knowing how to communicate with someone with dementia is a common problem.

Laura Gitlin, a dementia researcher and director of The Center for Innovative Care in Aging at Johns Hopkins School of Nursing, offered these suggestions in an article in the International Encyclopedia of Rehabilitation: Speak slowly, simply and calmly, make one or two points at a time, allow someone sufficient time to respond, avoid the use of negative words, don’t argue, eliminate noise and distraction, make eye contact but don’t stare, and express affection by smiling, holding hands or giving a hug.

Also, understand that people with dementia perceive things differently.

“You have to understand that when you have dementia you lose a lot of your natural perceptions of what others are doing,” Sandblom said. “So, a lot of us get a little nervous or suspicious. I think that’s a natural human reaction to knowing that you’re not picking up on things very well.”

4 ) Address Unmet Needs

Needs that aren’t recognized or addressed can cause significant distress and a lower quality of life. Rather than treat the distress, Power suggested, try to understand the underlying cause and do something about it.

Which needs are commonly unmet? In a study published in 2013, Rabins and colleagues identified several: managing patients’ risk of falling (unmet almost 75 percent of the time); addressing health and medical concerns (unmet, 63 percent); engaging people in meaningful activities (53 percent); and evaluating homes so that they’re safe and made easier to navigate (45 percent).

5 ) Respect Autonomy And Individuality

Rabins called this “awareness of self” and listed it among the essential components of a positive quality of life. Sandblom called this “being seen as a whole person, not as my disease.”

At the Alzheimer’s Disease International meetings, people spoke of being listened to, valued and given choices that allowed them to express themselves. They said they wanted to be respected and have their spirituality recognized, not patronized, demeaned or infantilized.

In a review of 11 studies that asked people with dementia what was important to them, they said they wanted to experience autonomy and independence, feel accepted and understood, and not be overly identified with their illness.

None of this is easy. But strategies for understanding what people with dementia experience and addressing their needs can be taught. This should become a priority, Rabins said, adding that “improved quality of life should be a primary outcome of all dementia treatments.”

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Resources, Tips, tools & skills, Toward better care

7 ways to preserve dignity


There’s lots of talk about preserving the dignity of people who are vulnerable, including the elderly and infirm, those who are differently abled, those who are approaching end of life and those who live with dementia, among others. But how can we actually do that?

Reflecting on what dignity is might be a good place to begin. Here’s are three definitions to kick-start the process:

1) the state or quality of being worthy of honour or respect.

2) a sense of pride in oneself; self-respect.

3) An individual or group’s sense of self-respect and self-worth, physical and psychological integrity and empowerment.

Beyond that, here are seven ways to preserve the dignity of others, and in the process preserve your own (downloadable the PDF below):

Deepen your understanding
Identify & satisfy needs and wants
Give freely from your heart
Never patronize, infantilize or demonize
Imagine yourself in their shoes
Tear down biases & barriers
Yearn to collaborate, not to control

See 5 ways we rob people who live with dementia of their dignity, and 10 practical ways to preserve the dignity of people who live with dementia.

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Resources, Tips, tools & skills, Toward better care

10 practical ways care partners can help preserve the dignity of people who live with dementia

One of the most shared posts on is this 5 ways we rob people with dementia of their dignity; so far it’s had 10k+ shares on Facebook alone. Dignity is clearly important to people who live with dementia and their care partners. So how can we, as care partners, actively preserve people’s dignity as they live with dementia? Dr. Allen Power shared some thoughts in this article: Dignity: What It Is, Why It Matters, and How to Express It, and I took the liberty of extracting some of the tips that appear at the end of it. Here they are:

1 ) Learn and use optimal communication techniques so that people are well understood and can understand you. Also learn how they prefer to be addressed. (Susan notes: BTW and FYI, this is how I don’t want to be addressed if and when I get Alzheimer disease.)

2 ) Never enter a person’s home or room without identifying yourself and securing permission to enter and engage with them.

3 ) Engage the person as an equal: at eye level or below (See Teepa Snow’s Hand Under Hand (TM) technique), speak to them as you would an adult, not a child, with appropriate pacing and enunciation for them to hear you; and with body language and attention that shows your openness and sincerity.

4 ) Always connect with the person before launching into any task.

5 ) Solicit frequent input and have the person direct all care as far as she is able. Check in frequently. Use Dr. Power’s acronym “SEE”: Slow down, Engage, Empower.

6 ) Do tasks with people, not to them or for them. Engage the person during any tasks; do not treat them like an object.

7 ) Remember: “no” means “no.” Never force care on a person who is declining. (Here’s an example of what can happen when people are forced.)

8 ) Do not argue (more on that here) with or deny what people are feeling or expressing. Seek to understand their perspective.

9 ) Always describe the person with words that you would want used to describe you. Do not use pejorative labels (e.g. “wanderer,” “sufferer,”) or terms that objectify or blame people.

10 ) Be open to learning from the person. Dr. Power’s advice on reframing engagement? “In any interaction, assume the other person is smarter than you are.”

More from Dr. Power on this topic here: Dignity: What It Is, Why It Matters, and How to Express It. His books are available on Amazon here: Dementia Beyond Drugs: Changing the Culture of Care, and here: Dementia Beyond Disease: Enhancing Well-Being; I’ve lifted some great pieces of wisdom from the first book here, and the second one here.

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Advocacy, Challenges & Solutions, NHBPS, Toward better care

don’t make things more difficult than they are

don't make it more difficult painterly

“When people think of ‘dementia,’” the article said, “it is natural to next think ‘memory loss.’ What we may not be prepared for is how other behaviours can change and even become difficult to manage. In fact, it is these difficult behaviours that families report as more troublesome than memory loss.

“Difficult behaviour” the article continued, “includes actions that are unsafe, destructive, highly upsetting or dangerous to self or others.” I get annoyed with care professionals who continue to propagate this kind of misinformation. I left a comment at the bottom of the article:

“I really wish people would stop referring to ‘difficult behaviours that occur with dementia’ and start referring to them for what they really are which is ‘normal behaviours caused by lack of knowledge, unsuitable environments and unhelpful approaches to caring for people with dementia.’”

I was encouraged when researcher, consultant, author, and dementia care advocate Leah Bisiani followed with this piece of wisdom:

“I agree with Susan regarding the unfortunate and outdated terminology used describing some behaviour of people who live with dementia as ‘difficult’ or ‘challenging.’ We all exhibit behaviour that can be perceived as difficult. Who among us hasn’t cried in frustration? Lashed out in anger? Spoken loudly during an argument? Left a room when we’re upset?

People who live with dementia experience the same range of emotions we all do. But their situation is far more complex than ours. Can any of us really understand the reality of those who live with dementia? How hard it must be? How traumatic?

When we describe behaviour and label people as difficult or challenging, we completely miss the markWhat we should be doing is questioning why we, cognitively aware individuals who have the ability to use our imagination, compassion and empathy, continue to disregard the unmet needs of people with a brain disease as they try to cope with a constantly changing and confusing world as well as unfair expectations.

It’s our responsibility to adjust ourselves and understand that our behaviour is more often than not the cause of behavioural expressions of people living with dementia. By truly understanding the specific needs of every individual and then meeting them, ‘problematic’ behavioural expressions can be reduced and even completely prevented.

It’s up to us to enter the reality of those we care for, to go into the world they live in where, without us, they would otherwise be alone. Each of us has the right to make our feelings known, to communicate our love, happiness, anger, displeasure, frustration or whatever else we feel in the best way we can, either verbally or through behavioural expressions.

Anxiety related behaviours that are described as ‘difficult’ or ‘challenging’ are actually efforts to communicate. They frequently occur when caregivers dismiss or neglect the differing reality or unmet needs of the people they care for.

Care partners who understand cognitive restrictions and provide care that respects the preferences of persons living with dementia in ways that least exhaust their capabilities are able to minimize or avert the kinds of behavioural expressions that negatively impact both the lives of care partners and persons living with dementia.”

I couldn’t have said it better myself, Leah Bisiani; thank you for making so much sense. If you need proof of your own, take this three-minute survey on behaviour.

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