Sunday, 22 April 2018


I'm just back from a truly inspiring conference hosted by the Asset Based Community Development Institute (or ABCD) and their Canadian partner, Deepening Community at the Tamarack Institute. 

The conference was titled "ABCD For Healthy Neighbourhoods" and what I learned from John McKnight, Cormac Russell, Al Etmanski and Paul Born (they are the ABCD Faculty) changed the way I think about our caregiving community.

The organizing principles of ABCD  have the potential to change the way we give care in communities. It's an approach that utilizes US - OUR talents and skills as force multipliers. Of course we will continue to rely on medical and paid services to be part of our family care picture, but the strength of our natural care community helping each other in an organized fashion builds a GOOD LIFE. A service doesn't build a good life.

In the family caregiving community, we have ASSETS:

  • Individually and collectively, we are wise, resourceful, loving, resilient, courageous and generous. 
  • We have a massive knowledge base about how to find care and give care. When we mobilize that knowledge base in local communities or online (sometimes online communities ARE our local communities), we crowd-source to solve health and family problems almost instantly using collective experience. 
  • We are supportive and we are great listeners. When a fellow caregiver is in distress, we gather around (we bring food if we are in the vicinity) and we sit with our fellow carer in a protective and empathetic group. In this way, we are like elephants who respond to calls of distress by grouping around an injured member of the herd, forming a cocoon of protection.  

Caregivers have SKILLS:
  • We know how to navigate complex health care systems and home care funding mechanisms. If we don't have the information ourselves, we ask another caregiver.
  • We know how to manage paid care in the home, so we become expert at human relations including developing training tools, strategies to supervise staff, and techniques to ensure the safety and happiness of our loved ones.
  • We are expert in developing relationships that work to get what we need from medical and social care professionals. We always say thank you and we remember birthdays and children's names of our professional team members.  We are masters of soft diplomacy. 
  • Our research skills rival those of NASA
  • We are expert multi-taskers.
Caregivers learn quickly that support and information can be found in groups of others who share a similar caring experience on the home front. Together, we form a movement of natural caring. We have power. I urge our community leaders to think about how to organize and utilize that power. How can the skills and assets of local groups of families be leveraged for better health and a collective easing of the burden of care? "What can we do together?" is the question. 


1) Peggy, a widow, struggles to keep up with the maintenance of her house in downtown Detroit. She has a garden but is too frail now to tend it. Rats have taken up residence in her weeds and social services have called on Peggy more than once in an effort to assess her for placement. She is now reluctant to answer the door. A community organizer matched Peggy with a nearby immigrant family who were living in small quarters with two young children. The family expressed regret that their children had nowhere to play and about a wish for a garden to grow their own vegetables. Peggy was introduced to her new neighbours and they became friends. The family now tends the garden and cooks for Peggy. The children call Peggy 'Nana'. 

2) In the city of Edmonton in Alberta, Canada, an organization called Abundant Community goes door to door with a short questionnaire. 1) What is your vision for our neighbourhood? 2) What are some activities and interests you would enjoy with neighbours and would you want to assist with any of these? 3) What are the skills, abilities or experiences that you would be willing to share with other members of our neighbourhood? I can envision the results of a neighbourhood questionnaire such as this one being used to share respite, food, hobbies, driving and just keeping company for the good of families giving care.

3) Here is a wonderful list of gifts and assets that vulnerable people bring to their communities. If you believe that you and your loved would have nothing to contribute that others would value in your neighbourhood, read THIS LIST - everyone has valuable assets. 


Call your neighbourhood association or your city government offices. Ask them if anyone is doing 'Community Organizing' using Asset Based Community Development principles. If someone is doing this work, ask how they are including the needs and assets of families giving care. If they don't know about ABCD, share this post with them. Share this with your case managers and hospital patient experience folks, too! 

Caring families, let's get organized. It's as easy as ABCD.

Tuesday, 17 April 2018


A couple of weeks ago, I was scanning my Twitter feed and this caught my attention:

Lindsay Fallow is a patient who wants his doctors to know that he is MORE than a patient - he is a person with interests and talents, a family and an illness. I think his idea is wonderful because it not only humanizes an encounter with medical professionals, it kickstarts an entirely new kind of honest conversation - one that is likely to be kind. 

Well, the responses came in an excited flurry. Everyone LOVED it - doctors, patients, caregivers - everyone! If you're on twitter, search #patientcv for a taster of the enthusiasm. "I am more than my disease", this CV says. And also, "this is what I find difficult about my treatment, this is what I find helpful."
Conversations with doctors and other clinicians are hard enough, but when a loved one with a cognitive impairment, communication disorder or just a fear of white coats get tongue tied in the clinic, bad things happen for both patient health and peace on the home front. So it's time well spent for caregivers to help their loved one create a patient CV.
Another gem of a toolbox I found for helping along doctor/patient/family conversations is this one from this patient advocacy support site. There are reflection documents to fill out like this:
and 'barrier cards' that prompt discussion and self-understanding about what makes asking for help so hard to do. 
I believe that patients and families get better service (ie. the help we need when we need it) if medical professionals understand who we are, the effect that an illness or disability has upon us and what we find most challenging and most helpful. These tools are simple ways to ensure that happens. 

Thursday, 12 April 2018


One of any caregiver's BEST and most SECRET friends is the community pharmacist. Why secret? Because most caregivers aren't aware of all the help that pharmacists can provide. Why best? Let me tell you this story of our pharmacist. 

Our son Nicholas was often ill and in pain. We struggled at home to keep him out of hospital. In those days, our community pharmacy was run by the Silver family - Ron and Janis. I was a regular customer and because the Silvers were our neighbours, they knew the struggles we faced caring for Nick. One Christmas Eve, Janis arrived with our medication order plus cookies she'd baked - she was wearing a Santa hat! (The Silvers are Jewish 😁) Another day, Ron called to ask how Nicholas was doing with his pain. I answered, "Not so great. Some days are better than others." Ron suggested that I try adhesive magnets on Nick painful hip - no charge. "If they don't work, just return them", he said. "If they do, they are my gift." I know that our experience with the Silver family is extraordinary, but I did learn that the pharmacist is a powerful ally for all caregivers. So recently, I came across THIS ARTICLE and decided it was time to sing the praises of community pharmacists everywhere. Here's a list from that link of all the different ways they can help. 

Administering medication
For patients, administering the proper medication at the right time and correctly is an important part of achieving desirable health outcomes. Independent pharmacists can have a positive impact by educating both patients and caregivers on the proper way to take medications.

For example, let’s say someone under a family member’s care is supposed to take a medication three times a day. Does that mean the medication should be taken every eight hours? Or should it be taken with meals at breakfast, lunch and dinner? The community pharmacist can explain the appropriate time to take each medication and explain potentially dangerous or adverse interactions — such as different fruit juices that might increase bioavailability or decrease absorption of certain drugs.

Pharmacists can also educate caregivers on administering drugs via syringes, the correct way to measure liquid medications and how to use glucose meters or properly take blood samples. All of this is part of the pharmacist’s duty to thoroughly explain and demonstrate to increase the caregiver’s confidence. 

Stopping potentially dangerous interactions
When patients are taking multiple medications, it can be a challenge for caregivers to keep track of which medication should be taken at what time, while also looking out for potentially dangerous drug interactions. Independent pharmacists should encourage caregivers to come to the pharmacy on designated “brown-bag days.” On such days, caregivers can collect all of the medications currently being taken by the patient under their care — both prescription and OTC —and bring them to the pharmacist for review.

Caregivers may not be aware that OTC medicines can have serious interactions or contraindications with prescription drugs. There’s also the possibility that caregivers use one pharmacy that’s more convenient for him or her, while the patient uses another. Prescriptions could also be filled through mail-order pharmacies. All of this means that it’s impossible for the pharmacist to have a complete picture of all the medications the patient is currently taking. The pharmacist can use the brown-bag day as an opportunity to encourage the caregiver to consolidate all the patient’s prescriptions at a single pharmacy, which will allow the pharmacist to monitor for compliance and potentially dangerous drug interactions more easily. 

How to ease a caregiver’s burden
Between work, family and caregiving, caregivers’ stresses and burdens can seem overwhelming, which is why it’s the duty of a community pharmacy to assist them in their role. 

Pharmacists are an integral part of a caregiver’s support network, and it’s important that caregivers are aware that a community pharmacy can be their greatest resource, where they go for reassurance, to ask questions and to gain insights.
A community pharmacy is the most accessible healthcare provider, on the front lines assisting caregivers with all their questions and concerns. As doctors require appointments and the internet is full of jargon, a community pharmacy could be the only place he or she can turn. This makes it imperative that independent pharmacists let caregivers know they are committed to offering convenient, accessible care. 

Given the busy schedules many caregivers have, which often includes full-time jobs and/or caring for their own children, a community pharmacy’s hours of operation might not be convenient. And if a caregiver has a late-night drug-related emergency, he or she will need to contact a pharmacist. To address this issue, community pharmacies can post an emergency after-hours phone number on their website and entrance that caregivers can call on nights or weekends if an urgent matter arises. 

Delivery services 
One simple way to create convenience and ease caregivers’ burden is by offering free home delivery services. A delivery option can make all the difference in providing caregivers with the resources they need to make sure patients stay compliant and adherent to their prescriptions. It’s this type of above-and-beyond service that makes community pharmacies such valued institutions in their communities.

Tuesday, 10 April 2018


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Yona and her sister Danielle
I am delighted to host a guest post by Dr. Yona Lunsky in celebration of National Siblings Day. Dr. Lunsky is a loving sister and tireless advocate for the good care and mental health support of adults with developmental disabilities. 

Today is National Siblings Day. I’m very proud of my colleagues in the United States who launched the Sibling Leadership Network in 2007 in order to prioritize and give voice to siblings of people with disabilities so they could connect with one another and impact research, policy, and practice.

I still remember the first time I learned about the experiences of other siblings. It was during my graduate studies when a Nisonger Center faculty member, Tom Fish , shared a video with me of a workshop held a few years earlier, where adult brothers and sisters talked with one another about what life was like for them.  The impact this video had on me is something I can’t even put into words. In Canada, we didn't have a national leadership group like the one they started in the US until now, with the recent formation of The Sibling Collaborative. Today The Siblings Collective released a report  written by siblings about siblings based on the survey that siblings developed and that 360 adult siblings in our country responded over the course of 6 weeks. The siblings who led this initiative had no funding to do this work; they just had passion and they had each other and they recognized that they needed to bring their voices together in order to make a difference.
The viewpoints of hundreds of brothers and sisters are summarized in this report and I encourage all of you to read it in its entirety, but in the meanwhile I want to highlight a few things that stood out for me. The number one challenge identified was the lack of mental health supports for their brothers and sisters. We know that health is a huge issue and that as challenging as physical health care may be for adults with developmental disabilities, there is even less available when it comes to their mental health care and it’s their mental health that allows them to get up every day, to feel good about themselves  and to  be part of their communities. There is no health without mental health so we need to address this to help our brothers and sisters. The second most common challenge identified in this survey was the mental health of their parents. Brothers and sisters are watching their parents age and struggle with their own mental health, as well as that of their child with a disability. It was not surprising for me to read, therefore, that nearly half of the siblings surveyed identified struggles within their own relationships, and in terms of self care. 
We need to do more for siblings and we need to start engaging with them earlier. Most of the siblings who responded to this survey are seeking supports and want their voice to be heard so they can play a strong role in the life of their brother or sister. Understanding the Sibling Experience ends with 7 recommendations which focus on understanding sibling needs better, creating opportunities to bring them together, giving them the resources they are seeking, focusing on mental health, housing and finances, and including siblings more fully in future planning - literally offering them a seat at the table. This final suggestion is not just targeted toward parents, but toward service providers and policy makers too. Our entire culture and our language needs to change if we really want to invite siblings in.

Helen and her brother Paul
Eric and his sister Sarah

Thank you Helen Ries, Eric Goll and Becky Rossi for your leadership in developing this report. I am so proud to be part of the Siblings Collaborative and eager to keep learning from my fellow brothers and sisters from across the country. You can listen to a podcast about this report next week, and you can also join the collaborative mailing list or facebook group.
(Yona Lunsky directs the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health  at the Centre for Addiction and Mental Health in Toronto, Canada. She is the lead author of The Family Guide on Dual Diagnosis, which offers helpful information on meeting the mental health needs of people with developmental disabilities and their families.)

Friday, 6 April 2018


Here's a question: Who sets out to change the world by designing a mobility aid? 

Unexpected answer: Someone who spent years in Afghanistan building schools for girls.

A few years ago I began reading about the Alinker Walking Bike and was intrigued. So last week, with the help of a mutual friend's invitation, I set out for an Ottawa suburb to meet Barbara Alink, the social entrepreneur and inventor of the Alinker. Barbara is from the The Netherlands and although she lives in Canada now, she still speaks with a soft Dutch accent. Here's a little of our conversation.

ME: How did you become interested in therapy and rehabilitation?

B: I didn't. I am interested in designing for people. I reverse design everything. I don’t focus on fixing a problem. Instead I ask people how they want to live. Most mobility devices are technical solutions for a body with a problem. They're not designed for how you want to live. The challenge I set myself was, 'Can a mobility device be so cool that people without disabilities can wonder how they can be like you?'

John Perry Barlow, lyricist for The Greatful Dead

Model Viktoria Modesta on an Alinker (LA Fashion Week Oct 2016)

ME: So what brought you to designing for older adults and people with disabilities? 

B: Well, I am an architect and I've always been interested in social change and social inclusion. I was building schools in Afghanistan, working with the Turquoise Mountain Foundation and when I went home to The Netherlands, I happened to be out with my mother. She glanced over at some elderly people on the street who were using walkers and scooters. My mother said, "Over my dead body will I ever use one of those!" I set out design a mobility solution for my Mom, but soon discovered that I could set my sights on changing perceptions about people with mobility challenges more generally. 

ME: So what are the features of the Alinker that make it so transformational, not only for users but for the whole of society? 

B: Well, the first thing is that the rider is at eye level with everyone else. This makes conversation easy and it promotes the idea that the rider is someone on a cool bike that offers freedom of movement rather than someone who has limitations. The second thing is that it promotes physical activity. Sitting on the Alinker seat removes gravity, making the forward 'walking' motion on the ground with your feet easier. Riders can travel longer distances without being fatigued.

ME: So how can people try out or purchase an Alinker bike? 

B: The website has that information and check out our partner organizations. Some of our partners are offering members free Alinkers. 

ME: What is the cost of the Alinker? 

BIn Canada the Alinker is sold for CAD $2,480 including taxes, in the United States for USD $1,977, in the Netherlands for $1,650 EUR, in New Zealand for $2,900 NZD, and in Australia for $2,600 AUD. We don't compromise on quality, that's number one for us. There's also a crowdfunding link on our website to make it easy for people who would like to raise the funds to buy a bike that way. 

Here I am on the Alinker - it's super cool and fun to ride - definitely my choice for a mobility bike whenever I need one.

And even if you're not in the market for a mobility device, but just want to know more about what drives someone to design everything from schools in Afghanistan to mobility bikes to change the world, listen to this inspiring TEDX talk by Barbara Alink - Dignity Through Movement. 

Wednesday, 4 April 2018


It is my pleasure to host this guest post about managing aggression in loved ones who have Alzheimer's or dementia. This is a difficult and painful subject, but one that many caregivers have to manage regularly and often with little support. Here is some excellent advice to begin the process of understanding and managing challenging behavior in your loved one with Alzheimer's.

One of the hardest tasks a caregiver faces when caring for a loved one is coping when faced with outbursts of aggression. Luckily, there are plenty of ways you can manage your loved one’s emotions in a way that empowers you in your role. Today we’ll be looking at a range of strategies caregivers can use to cope with aggression in Alzheimer’s patients.

Being a caregiver is a mentally, physically, and the emotionally-demanding role that comes with a high level of responsibility. If you feel like you could benefit from extra help, consider letting a professional trained in Alzheimer’s step in and assist.

Understanding Alzheimer’s Aggression

As Alzheimer’s disease progresses, your loved one may become agitated or aggressive and unable to settle. This restlessness or worry may cause them to lash out verbally and physically.

Recognize Triggers
Aggression sometimes arises without a trigger, but for most Alzheimer's patients, there will be a regular pattern you can learn to identify. When you recognize the patient's trigger, you can potentially shut down anger before it arises. Some triggers include:
·      Side effects from medication
·      Depression
·      Pain
·      Change in routine
·      Change in bowel movements
·      Memory loss
·      Challenging task (everyday tasks such as getting dressed may becoem challenging)
·      Confusion
·      Loneliness

Schedule A Physical Exam

If a trigger isn’t obvious, but your loved one has a change in appetite or a fever consider scheduling an appointment with their doctor. Many times aggressive behavior can be a sign of discomfort. A toothache, ingrown toenail, arthitis, urinary tract infection, and constipation are just a few of the medical conditions that may be triggering their agitation.

Remain Calm

It is a challenge to keep a positive frame of mind when faced with a loved one’s 
aggression. As best as you can, try to maintain a calm and positive demeanor. This will have a flow-on effect with your loved one, who will respond better to positive resting facial expressions.

When you feel overwhelmed, take a few moments to breathe deeply and focus, then step back into the environment with a healthy frame of mind. If you feel burnt out from caregiver stress, a common condition affecting those in emotionally-demanding roles, then consider seeking help from a professional.

It is best practice to remove yourself from any physically aggressive situations, and always prevent your loved one from doing themselves harm.

Solicit Support

You’d be surprised just how much up-to-date information or even a support group or online forum can assist you mentally when it comes to coping with a loved one’s Alzheimer’s aggression. These patients have real issues and simply aren’t as in control of their faculties as the patients themselves would like to be. The more knowledge and support you have the more likely you are to view your loved one’s responses objectively but also with empathy, and this outlook means you won’t get emotionally overloaded when issues arise.

Additional Tips for Coping
  • Provide reassurance and listen to their concerns.
  • Maintain a routine.
  • Keep their favorite books, photographs, etc. nearby to provide a sense of security.
  • Limit junk food and caffeine.
  • Build in periods of quiet time as well as activities.
  • Distract them with a favorite activity or snack when they become agitated.        
Consider Additional Assistance

Being a caregiver is a mentally, physically, and the emotionally-demanding role that comes with a high level of responsibility. If you feel like you could benefit from an extra set of caring hands, consider letting a professional step in and assist.