What Activities are Good for dementia? (Part 1)

January 10, 2022

We frequently get asked “what activities are good for dementia patients?” and also “how do you keep someone with dementia busy?”
Here is our first recommendation:

Create a dementia-friendly schedule

When your loved one living with dementia is experiencing change, a schedule can provide a useful framework to provide structure, consistency, decrease stress and provide a sense of comfort and control.

In our opinion, a daily schedule should take into account:

1. Strengths: consider the interests and ability of both the care partner and the person living with dementia. Consider when focus and energy are higher and lower and begin to plan around those times so that both you and your loved one can be set up for success.  As an example, if your loved one living with dementia has a hard time waking up and getting dressed, outings and appointments may, whenever possible, work better midday. If early evening tends to be a challenging time for focus and mood, it may be helpful to create a soothing routine of gentle music and lower lights - creating a comforting low stimulation time.

2. Challenges: physical limitations, etc.

3. Your Way: Your schedule should be unique, not be created/or measured against former schedules before a dementia diagnosis or even other households that have a loved one living with dementia. Your way is the right way for you.

4. Opportunities for connection: including safe touch through hand holding, eye contact if available, conversation and/or singing, or moving with music.

5. Opportunities to feel competent: singing familiar songs, easy to follow conversation prompts, sharing lived experience/wisdom, completing or assisting in safe household chores (examples include following laundry or setting a table).

6. Physical needs: movement, regular snacks, water breaks, meals and personal hygiene.

7. Transition time: generous time given for transitioning between activities on your schedule.

8. Flexibility : a schedule’s benefits can go out the window without leaving room for the unexpected including: physical or mental health changes, weather, visitors who are not part of your regular routine or special events. Attuning and responding to health, mood, events and shifts can actually freshen a schedule, bringing a new, possibly better way that can be folded into your schedule. Stay open and curious.

Here is one example of what a personal schedule might look like - enjoy exploring your own version, knowing that your way is the right way for you.

Additional Resource Reading here and here.

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Taking care over the holiday season

Dec 22, 2021

At The Good Conversations we recognize that the holiday season - now more than ever - can be a challenging time for people living with dementia and their care partners. Scheduled activities and/or appointments may be put on hold. Visitors of friends or family who are not part of our loved one’s daily routine may arrive either for short or in-house visits. And our life-long rituals of events, baking, meals that have defined holiday time and brought us comfort and joy int he past rub up against our new lives.

We can find ourselves getting frustrated or worse because we can no longer adhere to celebration customs as we did. To all these very real stress factors we say: be gentle, keep your expectations as open as possible, ensure that you have respite self-care time and maintain connection with people who understand and do not judge.

For a full list of holiday supports and resources, please see below:

Responding to Stressful Events: Self-Care for Caregivers (Public Health Agency of Canada)

COVID-19: Resources for Seniors and their Caregivers (Government of Canada) resources-older-adults-caregivers.html

Shifting Focus: A Guide to Understanding Dementia Behaviour (Alzheimer’s Society of Ontario, Alzheimer Knowledge Exchange and Behavioural Supports Ontario)

Ontario Caregiver Association and Helpline

Caregiving During the Holidays Webinar

Mobile Crisis Teams in Ontario (open source document)

Planning Ahead for Care Partner Absence (Alzheimer’s Society of Ontario and First Link)

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Let’s talk about …

A new series of
good conversations
about creativity and aging

November 12, 2021

Jennifer Hicks and Robin Gertin are the co-creators of The Good Conversations, a series of short on demand creative videos designed to be enjoyed by people living with dementia. Recently we sat down and talked about some
favourite easy, kind ways to be creative every day. We know, from our over 30+ combined years of professional experience, that participating in the expressive arts like singing, dancing, visual art, writing and drama improvisation can engage and uplift people of all ages and abilities. And the best part? The benefits have nothing to do with skill or experience, but have everything to do with enjoying the process.

Robin: “Hey Jenn, I’ve come across a fascinating book called Everyday Creativity, edited by creativity specialist Dr. Ruth Richards. The book is a collection of pretty scholarly essays from academics and scientists providing evidence that tapping into our creativity every day can improve our mental, physical, even spiritual health. So, let me ask you, what’s your favourite way to be creative? I’m pretty sure I know how you’re going to answer…”

Jenn: “Ohhhh, such a great question. I love to move my body to music, exploring what feels good and right for me. I’m not a formally trained dancer but I have studied how to make people feel comfortable and welcome in moving musically no matter what their ability is - it is such a joy to share. One of my favourite ways to start moving is pretending that I’m just getting out of bed. I stretch and yawn and just let my body do what feels good!

Robin: “ I really appreciate the reminder that we don’t have to be trained dancers to feel good moving with music. It seems like tuning in to your body and responding in an intuitive way to music can be available to all of us. When people ask me how to add creativity to their every day lives I usually suggest starting out with simple ideas like listening to music while you prepare dinner or cleaning up around the house. I encourage people to shop for creativity around their homes - rearrange objects on display shelves, take out a vase or dish you have not used in a while. It really does not have to be complicated or require tons of new purchases.

Jenn: “Those are all easy accessible ideas. And I find it so fun to refresh my home that way - always elevates my mood. But for people who may want to take it up a notch, can you share what your favourite way is to be creative every day?”

Robin: “Well, let’s see. I love playing with words, writing poems, crafting stories...First and foremost, I write for myself, so I can process feelings and events without worrying about an audience. Sometimes a picture or a conversation can inspire me, but I also use writer prompts that anyone can access online or from people in my life. One of my favourites is using the starting phrase “I come from…” and just seeing what comes out from there.”

Jenn: “Ah, I really like what you said about not worrying about an audience and just creativity writing for yourself. But Robin, I also know you love to sing…”

Robin: “That’s for sure. I’m actually a classically trained singer but I love a good old fashioned sing-a-long. For me, it's about coming together, regardless of your voice type or quality and singing joyfully. I love to recall songs I grew up with like Where Have All The Flowers Gone, or classic show tunes like Summertime (from Porgy and Bess) or My Favourite Things (from The Sound of Music) - don’t laugh, I even love singing theme songs from old television shows. It’s so fun to see how many people can join in.”

Jenn: “Oh yes, totally agree. We’ve done that so many times together with our work - and then it feels like we are just playing and laughing together.” I recently came across a study quoted in “Healthy Aging Through the Arts that backs up exactly what we are talking about; originally published in Art Therapy: Journal of the American Art Therapy Association, the study was conducted by Kendral Ray, a doctoral student and Girija Kaimal, an assistant professor of creative arts therapies at Drexel University, Philadelphia. They were able to show how 45 minutes of creative activity significantly lowered cortisol levels and stress, regardless of the person’s artistic ability.

Robin: “Look at us bringing research into our work Jenn! It’s such a hopeful accessible message that creativity can be available to everyone, the benefits have nothing to do with our ability and simple low-tech options are wonderful.

Jenn: “ That’s right. This is definitely going to be an ongoing “good conversation”. In the meantime, take good care everyone.”

Robin and Jenn: “Stay creative!”

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A good conversation with…

Phyllis Fehr

May 22, 2021

Phyllis Fehr is a dynamic dementia advocate who came to our attention through our membership with Reimagining Dementia: A Creative Coalition for Justice. We knew we wanted to start a conversation with her because of her lived experience. Fehr’s work, first as an ICU nurse and then as a dementia human rights activist, strategist, policy creator, changer, researcher, teacher, mentor and more is, as Phyllis might say, “high level stuff”. During a virtual visit on a recent sunny afternoon in early May, Phyllis generously shared key aspects of the life of purposeful caring she has created.

There is a quiet “aha” moment with Phyllis early in our chat when Jenn and I offer to give some background on who we are and how we are connected to the dementia community. “Oh, I read your bios, I know who you are”, Fehr offers calmly. Her preparation speaks to the years of disciplined organization acquired from working in the fast-paced ICU and being the mother to a lovingly quilted together family of 9 children. It also speaks to how Phyllis manages her time and resources today, contributing to local, national and international dementia organizations and initiatives. When we ask how she keeps it all straight, Fehr matter-of-factly holds up her tablet which she refers to as her “back up brain.” The tablet contains her schedule with neatly stacked windows indicating meetings and appointments, and excel sheets. It also serves as an instant prompter from google when she very occasionally searches for a word.

It is moving for us to learn that Phyllis’ life path story goes back to when she was 13 and became attuned to her grandmother - at the time euphemistically diagnosed with “hardening arteries”. Her grandmother displayed symptoms that “were never spoken of” including not being able to eat the regimented 3 daily meals demanded by her proper British husband, Fehr’s grandfather. Fehr intuited that her grandmother was expressing interest in a candy dish, as she leaned forward in her rocking chair, so she began quietly offering small bite sized portions of food to her grandmother allowing her to maintain some strength and nourishment.

The next formative event in Phyllis’s life came when her father became infirm from progressing cancer and it was revealed that he had been compensating for his wife, Fehr’s mother's own developing symptoms that echoed those of Fehr’s grandmother. Her diagnosis, a reflection of the times, was hidden behind the term “cognitive impairment”. Phyllis recalls how her family was doubly overwhelmed having to deal with both parents’ conditions at one time.

At the age of 48, in the midst of a busy professional and family life, Fehr became aware of some early symptoms of memory change in herself. Told repeatedly that she was far too young and able, it was not until she was 53 that Phyllis was able to get a firm diagnosis of younger onset dementia. It was a watershed moment. As Fehr shared with us, “the doctor turned from speaking to both my husband and I in our previous appointments to only speaking to my husband, like I was not even there and did not matter”. Through that singular experience Phyllis realized that dementia rights were fundamentally human rights and vowed that there would be no hiding, that she would endeavour to be “loud, out there, and make waves”. Three generations of women impacted by dementia allowed Fehr to find her voice and gave her the ability to rally all of her skills and experience to be a change maker and admired leader and mentor in the dementia community.

While we listen to Phyllis speak with great animation about her work, we notice her sneaking peeks at her phone. With a delighted grin Fehr fesses up that she has been receiving “secret” texts from her 6 year old granddaughter who is in school. As the texts keep rolling in, Phyllis turns her phone so we can see adorable neon hearts and inquiries into how her day is going. This show of multi-generational love and connection opens the door to more delightful sharing. We watch an awesome video of Phyllis and two of her grandchildren singing a song from pop superstar Pink called “A Million Dreams”, which Fehr says “makes me think of the experience of having dementia so much”. We have already been wowed by a video that Phyllis made with one of her grandsons that featured the two of them “rapping” to original lyrics that she composed herself. Phyllis leads by example in what she calls multi-generational learning. All of her kids and grandchildren have become involved in Phyllis’ advocacy work. They tell her openly and often that they are proud of her. It is clear that Fehr’s loving spirit and “can do'' energy is wonderfully contagious.

If you ask Phyllis how living with dementia has affected her, she will tell you that in so many ways it has not changed her, “I am still who I am”. She feels justifiably proud that she has changed the legacy of her family. Fehr believes that dementia has given her the ability to speak up and help be part of meaningful change. “When one door closes another one opens”.

* Learn more about Phyllis’s work here.

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A good conversation with…

Mary Fridley and Susan Massad

April 16, 2021

Last week, Jenn and I had the great fortune to sit down (virtually) with Mary Fridley and Susan Massad, two founding members of
Reimagining Dementia: A Creative Coalition for Justice. With an exponentially growing list of diverse members, the Coalition is quickly becoming an international lightning rod for changing the cultural conversation around dementia. We were thrilled to be able to meet these inspiring leaders and deepen our understanding of their values and goals because they align with and help inspire The Good Conversations (TGC).

Mary and Susan have been using creativity to shift the traditional medical model of dementia for years. Each woman’s resume is chock-a-block with accomplishments including being faculty at New York’s East Side Institute and creators of a series of improvisational theatre workshops entitled “Joy of Dementia (You Gotta Be Kidding!)”. Mary practiced social therapy for many years as well as being an accomplished teacher and workshop leader, playwright, theatre director and non-profit fundraising consultant. Susan spent 51 years practising and teaching internal medicine before launching a senior theatre workshop, authoring numerous articles about health, wellness and aging as well as writing a play that deals with aging and memory loss entitled Remember?Remember!

Given the acumen of both women, Jenn and I were awed to be able to chat with them. Not surprisingly, because both women have long-standing relational caring expertise, Fridley and Massad could not have been more down-to-earth, warm and accessible. At the beginning of our zoom meeting, we could see Mary sitting in the same cozy blue arm chair that she uses when calmly presiding over international zoom gatherings of the Reimagining Dementia Coalition. She immediately asked about a poster that was visible in the foreground of my office space, shifting focus away from herself. And when Jenn and I shared that we were fangirling, Susan giggled delightedly and made long-hand notes as we spoke, tilting her head to the side attentively, as if the conversation mattered to her as much as it did to us.

Both women have the ability to speak in clear tangy sentences when asked about the potential pitfalls of dementia language. Jenn and I, in an effort to do better, to not further stigmatize dementia have asked for feedback on phrases like “living with memory loss”, and “impacted by memory changes”. Susan and Mary both take their lead from their relationships with people living with dementia in and outside of the Reimagining Dementia Coalition, prefering to use the word dementia quite prominently, rather than dancing around or circumventing potential negative reaction But because they are leaders in what they call “radical creativity” they also don’t hesitate to pair the disease’s name with words like “joy”, “reimagine”, “just” and “inclusive”.

When we ask Fridley and Massad what their 3 a.m. wake up worries might be concerning what Jenn and I sometimes feel is a daunting wave of complacency and slow as molasses pace of meaningful change, both women give uplifting practical responses. As long-time community organizers, they practice the one foot in front of the other/build with what’s available to us approach of social therapeutics, which is based on self-organizing, creating opportunities for community so that social transformation can be possible. Every small step, every like-minded creative individual (from academic to artist, to carepartner to person living with dementia, to a recently self-described “person”) has a home in their movement and will make a difference. According to Mary and Susan, change and transformation in the way we all look at dementia is always open, available, possible. They don’t seem to get hung up or overwhelmed. After all, as Mary shares, “’s not a numbers game.”

Jenn and I have conceived and been creating The Good Conversations series of arts activity videos during the pandemic. It has been a full rich experience not without frustrations. We have had to adopt a flexible improvisational business model of “yes, and” (on a very micro scale echoing what Mary and Susan are hoping can be a more accessible, accepting larger strategy for integrated dementia - and life - modelling). Still, even on our sunniest days here at TGC, Jenn and I can feel lonely creating something fresh and, we hope, better for the dementia community. Connecting to Mary and Susan, becoming proud members of Reimagining Dementia, A Creative Coalition for Justice, creates a meaningful bridge between The Good Conversations and our larger community of creatives. Onward!

  • There’s more to talk about with Reimagining Dementia: A Creative Coalition for Justice

Recently The Journal of Alzheimer’s Disease published an article that was collaboratively created by senior members of the Reimagining Dementia: A Creative Coalition for Justice.  The article, Separate and Unequal is noteworthy for its challenge to the belief that there is no “scientific” evidence that arts - and creativity-driven approaches are effective.   Here is what lead author and founding member Pia Kontos had to say:

“The arts are not viewed as being grounded in science, but in fact they are: liberation arts, arts for social justice, there is evidence to demonstrate its effectiveness in terms of challenging stigma, redressing inequities, and fully supporting people to live well with dementia...and to improve health, well-being, and quality of life.”

The publication of this article in the Journal of Alzheimer Disease, a prestigious internationally peer reviewed medical journal, is a BIG DEAL - another exciting step towards moving the larger conversation to end the stigma and change the trajedy narrative around dementia forward.   Jenn and I are proud to be part of the movement to shift perspective on Dementia using the creative arts.   Please consider having a look at this exceptional article linked here.

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A good conversation with…

Our Origins Story

March 10, 2021

Jenn and I would like to share how we met and came to create The Good Conversations. Back in the "before times", prior to Covid 19, we both worked at a day program for people impacted by memory loss. We came to the program already having extensive experience using the creative arts to support individuals from many ages and stages of life. You can see our full biographies here.

Right from the start Jenn and I shared a deeply felt commitment to meeting people where they were in the moment without judgement as well as a similar gentle humour and creative playfulness. When the day program closed for safety reasons, Jenn and I continued to talk and brainstorm about how to continue the work we cared about so much. We began researching to see what kind of programs were available on line for the memory loss community. Where were they and how could folks access them? What we found was a gap in the market. The arts-based programs we saw were either well-intentioned but infantalizing or intimidating for beginners, emphasizing an end product rather than the joy of the process. Enter our lightbulb "Eureka!" moment!

We began "Zoom" meetings every Wednesday afternoon to start mapping out a brand new, fresh way to create engaging programming for people impacted by memory loss. We made idea maps of all our intentions, we sent each other links to creative people doing cool new videos (special shout out to Mo Willems and his Metropolitan Arts Centre lunch time series), we laughed a ton....and we kept going. We made our name, our logo, our colours, we met virtually with business mentors and we began creating content. Not going to lie; the path was slow and bumpy but filled with great creative discoveries. Have we mentioned that we laughed a ton?

Over the course of months, The Good Conversations brand began to take shape and our video content begin to have a framework, a formula. We learned formatting, editing, and production techniques that produced a perfectly imperfect warm and engaging video series. We are still learning, refining and figuring it all out - because we have never lost our heartfelt belief that this content and what we bring has real value. The difference now is that we invite you, our growing The Good Conversations community to join us, to be a part of the process, sharing and learning along side us. Let's connect!

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The Good Conversations
supports the Reimagining Dementia Coalition and the Let’s Reimagine global campaign to reduce stigma and promote innovative arts-based dementia initiatives. To watch the Let’s Reimagine video, click here.

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