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April-May 2017 Lived Experience Resource Exchange Summaries

April- May 2017 Resource Exchange Summaries

Summaries Resource Exchange:


This Lived Experience Resource Exchange for April and May 2017 is a summary of face to face conversations, two SE Ontario live (typed) chat conversations and one provincial live (typed) chat event. These conversations involved input from one hundred and nineteen people from across all of South Eastern Ontario. One hundred and ten people were spouses, adult children, family or friends and nine people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in April and May 2017 happened through phone calls, face to face meetings, one Province-wide Lived Experience Café themed live chat and two SE Ontario Lived Experience Café live chat that took place on . Participants were invited to share their input – not as a complaints department – but from the view of making things better.

April and May Resource Exchange – SE Ontario Lived Experience Network 

April and May 2017 SE Ontario Live Chat Summaries:

 April 2017 Live Chat Topic: In several of our SE Ontario lived experience advisory conversations both face to face and online the theme of technology has come up several times lately.

  1. In what ways would technology help/would have helped support you in your role as a care partner either in the home, caring from a distance or after moving to Long Term Care? Where are the gaps and what exists that is helping? Don’t be afraid to think outside the box.
  2. What are the barriers that exist to getting access to technology that would improve your experience as a caregiver?

Key Findings:

Ideas for apps and computer programs (existing and non-existing) that would improve people’s quality of life, recreational activites and communication:

  • “I would like to see Long Term Care use apps like “Promenade” or the use of Ipad to introduce finger painting, book reading etc. (Promenade is an IPAD app designed for family members and caregivers to use when visiting loved ones with dementia or related illnesses. It is a tool that can help stimulate conversation, encourage reminiscence, and make personal visits more engaging. It presents groups of photographs based on user selected topics and much more.)”
  • “I lived six hours away from my Dad. Staff would set him up on Skype so we could chat. It was the only way we could stay in regular face to face contact.”
  • “I Facetime with my husband and love it.”
  • “Skype and Facetime are such great ways for families to stay connected. Every Long Term Care Home or Retirement Home should use this.”
  • “The TV remote!! There has to be a better way. Why not make this Bluetooth so a remote can be accessed remotely?”
  • “My Dad could have had more independence if there had been a SIMPLE remote of the TV.”
  • “Assistive Devices for the blind has ten buttons on it. I met a lady whose grandson downloaded music to his IPOD then built a box on top with one button that said Granny’s Music. One button that turned it on and the same one to turn it off. I want that!”
  • “The television remote is a nightmare. Something that would make that easier would be helpful with simple pre-sets that can’t be jammed up or changed.”
  • “My mom’s phone had an app that held photos of the people she would like to call programmed in. All she had to do was push a button. That worked for a long time.”
  • “Sweet pea is an IPOD that is basically indestructible. I have had huge success with the sweet pea player. It turns off itself and you can load on the songs or books you want and pre-set the volume. Any button turns it on.”
  • “In regards to the TV, if X box can recognize your face when you enter a room, why not something that will search for some of my favourite TV shows?”
  • “The auto dialler is a reasonably priced gadget for the phone. It works simply by picking up the phone and it begins to dial a pre-programmed number, so no pictures or numbers or call ID is needed.”
  • “I would love to see noise elimination in Long Term Care like an app that recognized faces vs wrist alarms beeping at the LTC door as well as for chair and bed alarms. What if they just had alerts that went to cell phones staff carried –rather than bells that can trigger behaviours and agitation?”
  • “Alarms set off a chain reaction of residents yelling to shut off that noise. I agree – cell phone alerts or some kind of quiet alert would be so much better for everyone.”
  • “What about putting a barcode on items that normally go missing like false teeth, hearing aids, glasses etc. so they could be located and tracked and returned to the right person?”
  • “Tracking devices are also very helpful. My husband had a GPS for his belt.”
  • “I’ve read about google glasses. There is some promise for use for seniors with Alzheimer’s. It is worn like a pair of glasses but has GPS, gives facial recognition cues and immediate cues.”
  • “Aging in place technologies like video cameras and monitors could be useful. One family I know of uses this so the mother can run to the store nearby and still keep an eye on her husband at home.”
  • “Mechanical cleaning tools are useful too like automated Zumba vaccum cleaners, lawn mowers and I have a robot kitty litter cleaner for my parents.”
  • “Our LTC home has electronic pets both cats and dogs. They are really quite amazing. There are also babies that breathe and have a heartbeat for doll therapy.”
  • “My family uses IMO – it is similar to SKYPE but compatible with all types of phones.”
  • “Don’t forget YouTube – cute little puppy and funny children videos are great entertainment.”
  • “Intuitive gadgets could be part of LTC and Adult Day activity centres 24/7 that they can just walk up to and press a button and see what happens.”
  • “Emergency rooms should also have these kinds of activities to keep people calm and occupied. How nice it would have been to place a headset on my parents and have them entertained in emergency.”

Health Care Seems Lag Behind the Rest of the Culture Regarding the Use of Technology:

  • “It seems that health care professionals are very reluctant to communicate with care givers by technology. I realize that privacy is an issue but I wonder why it is so restrictive in this regard. My best experience was communicating with my husband’s specialist via email early on.”
  • “The lack of free and unlimited internet in some retirement homes, long term care homes and hospitals just seems crazy to me. It is as common place and useful as a phone line. People need it to communicate effectively in this day and age.”
  • “Wi-Fi in Long Term Care homes should be mandatory. You can get Wi-Fi in a MacDonald’s or hotel parking lot, older adults are getting more used to and dependent on the use of computers. It makes my life so much better that I can Face Time with my husband when I can’t get there. It also keeps him linked up with family who he would be completely cut off from without Skype and emails being sent of family pictures. This is an important gap.”
  • “With the accessibility of technology like Fit Bits, I am surprised there aren’t more of these kind of devices used to track patients to access their activity level and sleep patterns to gauge for pain or the need for med changes and monitor diabetes blood sugars by Bluetooth. Not that they should replace visits, but they would give doctors a better idea of their overall health over time.”

The use of Technology in elder care should be used with caution - Never replacing human interactions with technology based care:

  • “I love technology, but one has to be careful that they do not replace being there with “It was nice to chat with you today on Skype.”
  • “Video supervision is double sided coin, that’s for sure. I mean who wants to watch your parent pee in the sink? And who wants their kid (our spouse) spying on them? Think of the consent and capacity issues that would have to come to play!”
  • “Can you imagine watching your parent through a video monitor while in line at the grocery store knowing he was up to something and you are not able to act on it? That would be so stressful. Not to mention, you’d never experience a sense of respite and rest.”
  • “Access to technology comes with so many issues like privacy and consent.”
  • “When Long Term Care homes brings in technology like Wi-Fi it does create issues for them like who can help the person use it and who fixes it when it isn’t working right?”
  • “Technology exists to AID in the lives of people living with dementia – increasing their abilities and opportunities to communicate – but should NEVER replace human care and interactions.”

April Provincial Live Chat Summaries:


Our April 2017 Provincial Live (typed) Chat event on included ten lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury.) Participants were from Toronto, Perth, Mississauga, Brighton, Thessalon and London, Ontario. This month’s question came from a provincial team made up of Dr. Ken LeClair, Pam Hamilton and the North East BSO to help inform a project to unite physicians, clinicians and people with lived experience to improve collaborative care in geriatric health using the P.I.E.C.E.S. framework (a training format). To share as much information as possible with this team, this summary also includes the input of 24 South Eastern Ontario Lived Experience advisors from three live chat events in September 2014, October 2014 and June 2015 and one face to face advisory meeting that focused on their experiences receiving care from family physicians and their teams.


“When you consider your experiences with the different family physicians and their health care teams providing care, what approaches did they use that enabled you to be an active participant in the health care of yourself or your dependent? What strategies did they take to give you meaningful support that allowed you to be involved in decision making and care? Come prepared to share what worked – and what did not.”

Key Findings

Dignity: (Seeing and respecting the person as an individual with value, life history and purpose.)

  • “I find it hard telling the doctor what is really going on while sitting in the office with my Dad. It would be helpful if Dad was taken to another room to be weighed or something so that mom and I could share with is really going on (without hurting him).”
  • “We need senior friendly doctor’s offices.”
  •  “A good supportive doctor (and team) speaks to the loved one and sees them as a valued person, as one’s own father or mother. It is a good and supportive visit when the doctor is empathetic to the family who is grieving that their loved one is acting differently than they ever have or/and are slipping away.”
  • “I think there are some basic approaches for all aspects of treatment, whether it is for substance use or mental illness, but in the end the focus needs to be on THIS individual and what they need when exploring helping approaches.”
  • “Being treated with dignity and respect is so important. My husband is younger and he does not tolerate being talked “at” or like he is stupid.”
  • “Please look at me, “see” me when we are in a visit, not your laptop or computer screen.”
  • “When I finish speaking with my doctor, I feel like I’ve been really seen and understood – not simply processed. There is a relationship happening and that matters even on this small scale – especially when the health care situation is complicated.”
  • “I always hated when my husband would have to take memory/cognitive testing. It was so hard on him. He always dissolved into tears of humiliation and it would set him back for days.”
  • “When I look back on our journey, in all that time, I can’t recall anyone ever being asked how I was doing in the midst of my husband’s dementia.”

Consistency in the Care Journey: (This includes the need for care coordination and difficulty in navigating care, knowing who is caring for you and when.)

  • “Navigation is a big issue. I am very interested in helping others deal with their journey down the gravel train in the fog.”
  • “The part that is difficult is all the different appointments that the patient now has and has to get used to. “And then so and so’s office will call you,” and you we don’t know do we wait a week, two weeks, a month or six months for a call? What is appropriate?”
  • “Our doctor gave mom a pamphlet about the Alzheimer Society and suggested she call. This has been very helpful.” Only a very small number of participants were referred to the Alzheimer Society or Geriatric Psychiatry by their family doctors.
  • “It would be wonderful if the family health team would refer the person and families to the Alzheimer Society. We all know how complex the system is and how hard it is to find help and answers.”
  • “Things have improved drastically since we changed to a family doctor who takes a more collaborative approach. Now we have access to social work (for both us), referrals to geriatric psychiatry, there are programs for cooking, about diabetes and even walking groups. We can’t even begin to describe how this seemingly small change has impacted our everyday life and our overall anxiety. We used to feel adrift and now we feel supported and carried.”
  • “You are given your diagnosis and released to the wild!”

Clear Communication: (Listening and believing families, being proactive and collaborative and referring patient and family to other community supports or testing.)

  • “When my mother first developed some concerning signs, I consulted her family physician. He was of the opinion that it was her age and, as I recollect used the term senility.”
  • “We too reached out to my aunt’s family doctor. We had to be very persistent and ask for time to discuss our concerns. We just seemed to be dismissed initially. I understand the challenge, but what if the person doesn’t have anyone to advocate for them?”
  • “The hardest part was being taken seriously by the M.D. I finally got my mom to let me come with her and explain family concerns. Part of the problem is the amount of time given to patients. 15 minutes is just not enough time to discuss something like dementia or mental health.”
  • “For the most part the doctors have been supportive! My brother or I go in with my parents and communication is very good.”
  • “When I talked to our doctor, I brought the list of how to talk to your doctor, a resource that the Alzheimer’s Society created and then he really got it. I had to work hard to be heard.”
  • “I just don’t really know what is going on or how to partner. There have been lots of supports, but it just seems that when it comes to prescribing medicine, they simply tell us that this is to be expected.”
  • “When doctors can take their time and are thorough, that is so helpful.”
  • “My mother’s family physician (over 20 years) was rather condescending. When we suspected some form of dementia, he dismissed it. At the time my mother was in her late 80’s. She had a fall and there was a concussion and some small brain bleed. Over time, this doctor was not very helpful…quite often he would say, “Mae has had a nice good long life, just let her be.”
  • “Taking more time is key. A person with dementia or mental health issues can’t be rushed! Our doctor has even booked a “double” appointment so we had enough time – really listening and supporting both the patient and also the family.”
  • We had a hard time being heard…first the family doctor did not take me seriously. Then at the psychiatric ward there was no discussion of options initially – until I made a threatening pest of myself for months, I had done my homework and we had a change of doctors. The new doctor was first and foremost a good listener. She was not stuck in “this is how it’s done” mode, but was open to alternatives and good at accessing information and following up. She was very willing to work as a team. It takes a team and families/care partners must be part of that team for it work!”
  • “My doctor was absent from this process. Usually, he had a nice chat with my husband and that was it. I did not always feel listened to.”
  • “My doctor nailed it. He was honest yet caring and came right out and said “if your Dad ends up in hospital, these are the potential outcomes, have you thought about them? Let’s discuss them.”
  • “I am fortunate our family doctor and specialist always make time for me to speak to them privately about my frustrations and concerns. Not that there is a lot to offer, but they did refer me to CCAC and the Alzheimer Society.”
  • “I have found there is a fine line between doctors having a “consultation” with the patient with dementia/ mental illness and having the caregiver present. I resented being excluded from visits because my husband could pull off a pretty normal façade for a few minutes and was charming to boot. I wasn’t sure the doctor got a complete or accurate picture of our situation.”
  • “Let the caregiver be a quiet “witness” toa visit and then give them a few moments alone with the doctor afterwards – (time for them to share what they know and also to be cared for themselves) – a wise doctor realizes he is dealing with TWO patients, not just one.”
  • “I remember taking my Dad to an eye exam and hearing the doctor ask him repeatedly which is better one or two….What was the original question? He just couldn’t communicate that quickly or more than one question at a time.”


Sufficient Staffing and Services:

  • “Our family health team are really nice and care deeply about their patients, but the system isn’t keeping up with the need. I get the impression they want to do more but feel powerless because of the restraints they must work within.”
  • “The system is not able to keep up with what’s happening in the real world, their model isn’t keeping up.”
  • “I have a social worker who is a wonderful support, but it is only once a month and it is just not enough when you are coming unglued.”
  • “Sometimes I think the doctor needs to focus on the person living with dementia; but is unable to see the caregiver can be deteriorating in their health. Perhaps, they need to call in the caregiver to talk to them about their physical and mental health.”
  • “Caregivers and families need support, social work and counselling for just them. They are like the walking wounded, dealing with stress, grief and loss while often at the same time being forced to do things and make decisions that are outside their comfort, knowledge or skill levels. This is a real gap.”

Knowledge and Skill: (this refers to having knowledge about dementia, mental health, substance use and other cognitive impairments, but also a knowledge of resources and specialists that can help the patient and family/care partners.

  • “As well as having knowledge, skill and expertise about dementia, mental health and so on, we also need them to be able to know who to refer us to when it is outside their scope.”
  • “There has to be knowledge of the supports that exist for families in that region.”
  • “I think it would be helpful if family physicians had some training on geriatrics and mindfulness to pass along to caregivers.”
  •  “A good supportive visit is one where the doctor takes their time to really understand what is going on, gives helpful tips and helps you to understand what is happening. I didn’t know Dad’s illness would was going to take away his ability to handle his emotions; A good and supportive visit is when the doctor points out resources for the patient and family.”
  • “Are physicians really given a fair shake? I don’t believe they can be specialists in every area and sometimes we expect too much from them. However, they do need to have skills to recognize the caregiver is calling for help.”
  • “A collaborative approach is key: understanding how the illness is affecting the person and their family/caregivers and then reaching out and looking for other members to be part of a “care team” of knowledge and support.”
  • “Family doctors act as a gateway to care form other parts of the healthcare world. They have very important role.”
  • “From my experience, family doctors are trained for physical health –not mental health.”“I find so many people working with older adults have no real “dementia” training and it makes a huge difference. Everyone who works in health care…whether they are a janitor, an office administrator, a psw, nurse or doctor – they all need more training and knowledge.”


Care and Compassion:

  • “I am learning there is such a difference in knowing about something and the personal experience and emotions that go with it.”
  • “The problem with “having the background” is being told “well, you know this.” I am not my mother’s nurse. I am her daughter.”
  • “They also need to listen even if there aren’t concrete solutions. It helps to be heard!”
  • “You will never forget how that person made you feel.”
  • “What makes a good visit with an M.D….providing time to share the story, space and openness to uncover the real challenges or fears the patient is experiencing and also the family. Self-reflection by the physician to recognize their comfort level and limitations in supporting patient with dementia or other cognitive impairments takes a level of maturity.”
  • “Even when they can’t change the outcome – caring goes a really really long way! It makes a difference when health care providers are aware of the impact all of this has on family members.”


May 2017 South Eastern Ontario Live Chat Topic:

Our May 2017 SE Ontario Live Chat question comes from Providence Care Seniors Mental Health. Last month, all the hospital services of Providence Care moved under one roof into a new hospital building. This was an exciting but huge transition for the patients and residents on Providence Care Seniors Mental Health.

Reflecting on your lived experience, what was the real challenge for you, as a care partner, during the transitions in care of the person you were supporting?  From your perspective, what was the most challenging aspect of the transition for the person you supported?  For these challenges, what was the problem in your opinion?  What would have improved this transition for you and the person you supported?  If you or someone you know made the move to the new Providence Care Hospital, what was the experience (positive and negative)?

Key Findings:

Caregivers are Constantly Impacted by Change and Transitions in Matters Big and Small:

  • Live is full of transitions in caregiving. My husband is changing and transitioning every day.”
  • We went through a similar situation at the nursing home where Mom is now, but on a smaller scale. They built two new wings and moved my Mom to a new wing. It took forever for her to get used to where her room was.”
  • My mom went through a recent change in her retirement home. She just felt overwhelmed with the halls and how she was going to find her way.”
  • “Our transition has been ongoing for ten years. Before my brother passed away he lived with my Mom. He kept telling us that Mom was having problems but it was hard for the rest of us to see it. After my brother passed away, we got a real eye opener.”
  • “When the crisis hit we had to put services in place, set up direct payments for banking so bills would get paid and had a power of attorney papers put in place.”


Family Dynamics Play a Factor in the Success of a Transition:

  • “When my mother needed to go to a retirement home, she was fine with it, my Dad was not. He would say, “Why aren’t you coming home? This is costing so much,” and my mother would say, “That’s it, I should move home.” It was a very stressful transition.”
  • “When we moved my parents into a smaller home, I took a lot of flak from family for “making them move when there is nothing really wrong with Dad.”
  • “It is so tough for families when there are big changes happening especially when there are different opinions and passionate ones at that.”

Factors that Helped During Transitions:

  • “It isn’t something you can make happen, but if the person (and the family) can try to take a positive outlook it makes all the difference. Mom always amazed us. She turned to me and said, “Well, I guess this needs to happen and I am going to make the best of it. And that she did. She was on the resident’s council and was always the live of the group, participated in everything she could. Even now as the dementia progresses, she has doll therapy and just loves that baby to pieces. I believe she is happy, she is just in a different happy place and I am whoever she needs me to be on any given day.”
  • “Mom’s transition was tough at first. She had just lost so much, her home, her husband, her car and now her mind, but the staff, volunteers and other residents really cared for her and helped mom to settle over time.”
  • “For us consistent support was key – both at the Alzheimer Society and then later the LTC Home. That was what made it manageable at the end.”
  • “About four years into my mom’s time at LTC, she just changed. She started crying all the time begging us to take her home and became very aggressive to the other residents and staff. We couldn’t tell what triggered it or brought it on. It was the doll therapy that came in and turned things around. One of the staff’s daughters walked up to Mom and handed her the doll and the transformation that came over her face is something they still talk about. It was like a curtain had lifted and the life came back into her face and eyes.”
  • “Persistent and initiative staff can make a huge difference – patiently trying different things as well as changing medications.”
  • “I can’t say enough about the staff. They do seem to really try to get to the root of what is going on and they welcome any insights or thoughts the family has. We really do come together to try and figure things out.”
  •  “Clear communication and choices would be helpful for families when decisions are being made, it would be helpful if the path was more clearly laid for you.”
  • “I think there has to be more time given once a bed is assigned. When we took Mom’s bed it was like being swept up. In a matter of two days we took my Mom from the city she was born in and swooped her away to somewhere unknown. There was no time for her to say goodbye to all her friends, I am sure there are some that are still wondering what happened.”
  • “That rush through your transition (after you’ve waited and waited) is so tough to manage and get over. A little less rushed transition with clearer and consistent communication lines – that would help make transitions smoother.”


April- May 2017 Face to Face Advisory Conversation Summaries:

Barriers to Receiving Quality Care

  •  “What is happening in hospitals is really frightening. People are being sent home and rushed out the door before they are ready to be released and being sent home with older caregivers who are also sick and do not feel supported. There has to be something to bridge the gap between hospital and long term care – and home is often not that place.” *This was a reoccurring theme throughout April and May – several families called and emailed stories of being sent home from hospital before they felt prepared or equipped to manage. Lack of communication and a systems navigation person were the most common themes for this resource exchange.
  • “I know they want to keep people home longer, but given the need, there has to be more long term care homes and affordable retirement home options.”
  • “I am concerned that I see more and more activities that were handled by nurses in the past being replaced with non-registered staff. There is a reason they have all that training and things could be overlooked by people who don’t have the training to know what they should be watching for.”
  • “I think there needs to be more dementia training for family physicians about the disease and also the regional and local resources that exist for families.”
  • “I am happy to see the work that is happening to create the Dementia Strategy. So often services are reactive not preventative.”
  • “A person with dementia needs a care team approach a “circle of care” that works together. It needs to be an automatic response – this isn’t happening just yet.”
  • “Transportation in rural areas is a real issue. Also, the cost of transporting someone who is immobile is unaffordable – over $200.00 for a ride to the next town. Most people don’t have that kind of money.”
  • “Getting a doctor’s appointment is a real challenge. You call and call and just get a busy signal and are not allowed to leave a message.”
  • “Finding where to get care and knowing what services are out there that you qualify for is tough. It is so hard to get answers and I don’t know who to ask.”
  • * Participants reported that it is a very difficult process regarding Non-insured health benefits for First Nation people in the Territory, such as benefits for medications and dental work. One family reported their relative had Chrone’s disease. The medication was not working and the person’s health was deteriorating. There was medication available but it cost $1800.00 for one treatment. They had to fill out lots of complicated paper work and receive the assistance of a NHB (non-insured health benefits) Analyst (there is only one in the region). It took them 8 months to get the medication covered.”
  • *The Hearing Society was on strike at the time at the time of this conversation. People reported not being able to access translators and interpreters to go to appointments and to complete tax returns. In general, it is difficult to get an interpreter and you need to book 2 to 3 months ahead for an appointment and there is a fee.
  • “Inconsistency and unreliability has been something we have experienced with home care. People switching around their times, leaving early, arriving late and the staff changing all the time. I realize it isn’t totally the staff’s fault – but this is not the way to provide care to people who need consistency so very much to live well.”
  • “I wish I had known more about the disease and how to handle him earlier on. There are things I would have done differently if I had known what to do.”
  • “If only there was one “care” advocate or navigator or agency that was there for the person to help them walk through their “whole” health experience – not someone being pressured by an outside party or agenda – just someone who walked you through and advocated for what was best for you!”
  • “Our doctor didn’t see it, coordinators delayed and no one would listen for two whole years. Friends fell away and we didn’t know what to do. It was several years before we really got the help (and belief) that we needed. The hoops you have to jump through …”
  • “Family dynamics are definitely a factor. This being a second marriage there are so many issues that keep people from listening to each other and being supportive.”

Supports that Help:

  •  “The ambulance service here is really great. They are so helpful and always so such respect and care. They even shovelled out a long lane way for us.”
  • “We really enjoy the Memory Café offered by the Alzheimer Society with the brain boost, education and brain exercises.”
  • “We have found in order to get the care and consistency we need, we have hired private home care and they are wonderful. It is so much less stressful.”
  • “We are so pleased with the help we got from CCAC, physiotherapy, oxygen – everything was there and they followed up.”
  • “We had a wonderful cardiologist. He was so empathetic and there was great communication.”
  • “After a very difficult experience with a family physician, we were accepted at our local Community Health Centre and are so pleased with our experiences. They listen, explain things in a compassionate and clear manner, are pro-active booking your appointments, they have cooking classes and exercise programs. We can’t even begin to explain how much this has improved our lives.”
  • “I love that the Community Health Centre provides programs that address health care needs like diabetes, nutrition, etc.”
  • “We’ve been well looked after at a N.P. clinic.”
  • “Very pleased with our family health team. It is a one stop shop for help with diabetes, stroke and memory clinic. We feel very well taken care of.”
  • “Our experience with The Memory Clinic was very positive. They helped us to navigate and connected us with the Alzheimer Society which has been so valuable!”
  • “The Alzheimer Society has been a great support to us. We honestly don’t know where we would be right now without their counsel and support.”
  •  “Our experiences improved dramatically once my mother was connected with Health Links and received a Care Plan. The difference was night and day. Every person living with dementia should have a care coordinator working on their behalf.”
  • “The Alzheimer Society has been my life line. They have been the arms around me before and after the disease.”
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