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The Lived Experience Cafe chat

April-May 2018 SE Ontario Lived Experience Resource Exchange Summary

April- May 2018 Resource Exchange Summaries

Who? 

This Lived Experience Resource Exchange for April to May 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 73 people from across all of South Eastern Ontario. 58 people were spouses, adult children, family or friends and15 people were older adults living with a dementia, mental health or other neurological disorders. 

How?

Advisory conversations in April – May 2018 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 www.dementiacrossroads.ca . Participants were invited to share their input – not as a complaints department – but from the view of making things better.

April - May 2018 Face to Face Advisory Conversation Summaries:

Face to Face Advisory Meeting Findings

Supports That Helped:

  • “The peer to peer support we get in Alzheimer Society support groups really help. Friends stay away after you get Alzheimer’s. It can be such a lonely feeling.”
  • The VON in-house respite is allowed to take the person in their car for a drive. This is a huge benefit to me and my husband.”
  • “I live in a long term care home, and they are very good to me. I like to make jig saw puzzles. I’m quite good at it and built a tray to keep my puzzles under my bed while I am making them. I can’t be part of every activity, but they take great care of me.”
  • “The thing that holds me together is the support groups. The friendship, fellowship and sharing of ideas really helps me to cope and not feel so alone in this.”
  • “We’ve been provided with assistive devises on trial to help keep us safer at home. Some of them are not being used – but other ones (like the arms on the toilet are very helpful.”
  • “We had a great experience with our doctor. He was very helpful and referred us to the Alzheimer Society right away.”
  • “Have a good relationship with your doctor is key. I was amazed at how wonderful our doctor was. Communication was good and so was the follow up.”
  • “Community Care drivers and Meals on Wheels have been very helpful for us.”
  • “We have been able to take part in a research program through Queen’s University and Providence Care and have found that to be a very positive experience.”
  • “Our long term care home just started a wood-working program and are starting to gear more of the activities towards men – which is something my husband is really enjoying.”
  • Participants referred to Care Essentials, a four week long course offered by the Alzheimer Societies as being very helpful in their knowledge about coping with dementia as well as the IPOD music program. They also spoke highly about Friendly Call – a volunteer that phones to check in on them and ask them if they took their medication etc.)
  • Participants felt very supported by home care and their adult day programs – the only issue was the lack of consistency in sending different PSW’s each time and changing up the times of care to suit the needs of the agency.

Challenges:

  • “Respite continues to be a real need. Caregivers need more help and support. It is such a heavy load carrying everything all of the sudden.”
  • “I think loneliness is one of the biggest problems – we both feel so alone.”
  • “We definitely could use more respite. I can’t leave my husband long. Friends come, but only for an hour.”
  • “Looking ahead to the future is very difficult right now. It is like looking into a very cloudy crystal ball. It is scary when everything is so uncertain; it is not an easy to live with this not knowing if and when you will end up in long term care.”
  • “I am so tired from all the running around I do – taking him to appointments, to meetings to adult day. I don’t have a life of my own any more. I feel like the Social Coordinator and just managing his dementia is a full time job. Our calendar is full.”
  • “Hospital Emergencies are not a good place for people living with dementia. My husband had to go there a month ago and he was given no food or water. It was not a good experience at all.”
  • “Day programs are great but they need to be geared to different mixes of people – to be flexible and geared to the person.”
  • “I think respite needs a broader definition. What is rest for me might not be rest for you. It isn’t just baths and dressing a person.”
  • “I’m still working full time and looking after my husband who is at home with dementia with no home supports. We’re coping with phone calls and my employer is very flexible – but I won’t be able to do this for long.”
  • “Caregivers need education and navigation!”
  • “I desperately need a break, but having people come in to stay with my husband just didn’t work. He felt like he had to entertain them which stressed him out and just caused more behaviours.”
  • “The support I get from Veteran’s Affairs is very helpful. I get a small pension, housekeeping, transportation and some nursing care.”
  • “We had trouble getting our doctor to see that there was an issue. He didn’t seem to want to recognize the symptoms. I’ve been a caregiver for 11 years and I am exhausted. I wish there was more counselling for caregivers around ways to cope…it’s like you go through the ringer with them.”
  • Ageism: “We had a very difficult experience in the hospital My mother was 91 and she had dementia (they kept saying that to us) and so they felt she wasn’t worth treating. She’d fallen and broken her arm… and her arm was displaced and the doctor did not come in to see us for nearly 24 hours. They didn’t do anything. They didn’t give her pain medication, they didn’t put it in a sling, they just left her. She was in excruciating pain and ended up having a massive heart attack. They need to not dwell so much on that you are old and have dementia, but give the family choice. They left her all alone in her room in such pain and distress.”
  • Department of Transportation: People expressed they felt people who wanted to keep their licenses but have had them taken away (for good reason) are being taken advantage by “DRIVE ABLE” “My biggest challenge for the last three years has been around the issues of my husband fighting the loss of his driver’s license. My huge huge issue and I don’t know who is going to help me with this the whole Province of Ontario and Department of Transportation is out to lunch…They don’t handle the people with dementia with any kind of dignity or care. They also make it extremely difficult to get their license removed and they TELL the person that you can go to “Drive Able” which is the worst thing ever! Three times my husband has gone to Drive Able to the tune of $800.00 a pop – and be told her is “borderline” and can come back again. They are just taking our money and giving him false hope which is cruel. I’ve written to the Minister of Transport in Toronto and I have been every where and done everything with no help. Drive Able is a private company just making a fortune. My husband failed the cognitive test all three times but they tell him he can come back and try again.”
  • Communication was mentioned as an ongoing issue in all sectors. Participants also felt all staff and volunteers working with people living with dementia needed more behavioural supports training to provide help without resorting to medications. The importance of using personhood tools to “know” and communicate on behalf of the person who could not speak for themselves was also mentioned. “Our home is just beginning to understand what my husband needs and how to work with him in a way that works. They used to order him around – which of course just does not work with someone living with dementia. You can’t order them to do anything – you have to learn to work with them. They would argue with my husband too. He is in the here and now…that just made everything worse.”
  • “Issues around driving and removing a person’s driver’s license continue to be a program. One spouse stated her husband refuses to go to the Memory Clinic because: “That is just the place you go for them to take away your driver’s license. They also talked about discussed the challenges of their family member being on medications that are prescribed at multiple times during the day because different doctors have described them in this manner –rather than looking at their medications in a holistic manner and planning times in a less chaotic way.”
  • It was also mentioned that some of the Alzheimer Society Adult Day programs are not funded by the LHIN or are not dementia specific and that this is a need.”

Other Observations:

April 3, 2018 SE Ontario Lived Experience Chat Question: Feedback received from eight lived experience advisors who live in Kingston, Smiths Falls, Brighton, Trenton and Kingston.

BACKGROUND:  This month’s chat topic came out of conversations with different members of this lived experience network, it is called: “If I only knew then what I know now.”

QUESTION: As family care partners, most of us are learning about dementia, complex mental health, substance use or other cognitive impairments and the health care system and the supports us as we go along. I often hear people say “If only there were a manual” and “If I only knew then what I know now.”

On April 3, come prepared to share the important lessons you have learned  – both in times of crisis and just day to day lived experiences – with other family care partners and also to the health care system as a whole, so they can be better prepared to support older adults and their families.

KEY FINDINGS FROM SE ONTARIO LIVED EXPERIENCE MEMBERS:

Helpful Support and Services:

  • “From diagnosis to reality...Thank God for the Alzheimer society...info about the dementia and resources available.”
  • “For us, the Alzheimer's Society is the only bright spot in this scenario.”
  • “The transition for my family member was actually was quite smooth. We had the Mobile Response Team provide support for the transition and that worked beautifully; allowing my husband and his brother permission to leave that first day. The transition for the family was exhausting.”
  • “Where my wife is I find that nearly all of the staff are caring and respectful, I think I am lucky in the choice of LTC home.”
  • “So far we have had an extremely positive experience in LTC.”
  • “I think that why my husband’s transition was so smooth was because the Director of Care and her assistant actually came to the hospital where he was and sat and talked with both of us for almost an hour. They had a good picture of who we were."

Difficulties, Emotions and Decisions:

  • “My problem is the guilt I feel every time I leave after visiting, my wife doesn't understand why I can't be with her. I've tried to find a facility that will accommodate us both, but so far am not successful.”
  • I wish my wife would adjust. She is not happy which is why I got in so frequently to visit to supplement for the staff shortage and look after the details as I can’t expect them to care for her the way I did at home.”
  • “We need a kinder and gentler system when it comes to assessments, care and transitions. We have to slow things down to do things well.”
  • “The transition from home care to Adult Day to Long Term Care was a nightmare. Before LTC I was part of the team that kept dad as part of the community and active and feeling like he was a valuable member of society. I felt rejected as member of the team with LTC and was saddened at the lack of respect for him as an individual.”
  • “My wife and I discussed this earlier and one thing we identified was that we would have done more travelling when we were able. We both love to travel and didn't realize how quickly we wouldn't be able to do that. She has a visual spacial impairment because of the disease and gets confused and anxious in unfamiliar surroundings.”
  • “I honestly struggle with this question. My mother in law was just admitted to LTC through a crisis admission and I keep reflecting and asking what we could have done differently to make this a smoother transition. I am not sure I could have done anything differently for my m-i-l because she was so resistive to the acceptance of the diagnosis as well as the support required. She refused everything despite us knowing supports could have kept her independent longer and having her name on the LTC list much sooner would have avoided the crisis admission. Despite my knowledge of the system of care as well as the disease process, I honoured her wishes; respected her dignity and we still ended up in crisis.”
  • “I knew dementia would affect their memory but I had no idea how many areas of our life it would impact…like travel and socialization… and the anxiety part and the changing sleep patterns all those things make one’s life really small.”
  • “I was surprised by the lack of choice and control. It all just happened and there was no way to slow it down or change it.”
  • Because of the structure and design of LTC, I felt I was no longer part of the partnership and the circle of care. The ratios in Adult Day are 1/5 approximately. In LTC they are so stretched it is often all they can do to get through the day.”
  • “I have had great support from the local Alzheimer Society and their support groups. We have just gone through our first assessment with Home & Community Care. I was very impressed with their professionalism and prompt response and follow up. I must admit I was very skeptical when I contacted them but their response exceeded my expectations.”
  • “I didn't fully appreciate the impact that her limitations would have on me. We had both had pretty traditional roles in the household and fairly quickly I was faced with a whole bunch of new tasks for which I was ill prepared as examples cleaning the house, doing the laundry, preparing meals, shopping for groceries and gardening (this had always been her hobby). It also meant I had less time for my activities golf, curling etc.”
  • “No matter what is done to smooth the change, it is a radical difference when you move from your home to LTC.”

Lack of Education and Information:

  • “The biggest thing I did not know about - that I wish I knew - was delirium! Who knew a Bladder infection or dehydration could send someone on such a "bender"? That is one thing I wish I knew about before we took mom to ER. Everything we were doing to make her well was actually making her sicker because we didn’t know what we were doing. That will be something that always bothers me about this journey.”
  • “We met with two doctors and two neurologists over a span of two years before we got a diagnosis all the time knowing that there was a problem. It shouldn’t take that long but there doesn’t seem to be a well-publicized clear path that leads to that end point.”

Advice:

  • “Naps, that’s my one serious piece of advice ….take naps!”
  • “Be quick to forgive yourself and others…move forward so things will get better. Compliment jobs well done and give yourself lots of pats on the back.”
  • “It is hard to think about having a rest when there is so much to do in a short span time when they are at day program, but looking back now I think it could have helped me to think more clearly. I don’t know how people do it when their loved one is home all day and needing constant attention as my husband did…he would get anxious immediately if I was just in another room.”
  • “I frequently hear members of my support group say that they waited too long to get help…whether it was hiring a house cleaner, getting PSW help in the home or transitioning to a LTC home.”
  • “A support group is key for sure!”
  • “Sometimes you are honouring your loved one’s wishes (not accepting help) at the expense of your own health. We always say we wish we had insisted on supports. It may not have changed the outcome but it may have changed the tumultuous journey.”
  • “As a good friend always reminds me: Don’t should all over yourself.”
  • “I’ve been told it is worse for men. We want to be strong and fix things so we are slower to ask for help. We think that may be why there are fewer men participating in our “men’s caregiver support group”. It really is too bad that some people try to struggle through on their own.  I have learned more from that group than almost any other single source.”
  • “Perseverance and advocacy is key.”
  • “You will have to advocate and educate staff about dementia and your person’s needs and issues. They just don’t know what they don’t know so don’t assume they will.”
  • “Remember the importance of rest, self-care and asking for help earlier – not after we are totally burned out. Let go of guilt and walk in the peace that you are doing the best you can with the resources that you have. Take one day at a time.”
  • “Learn as much as you can – from each other and through resources that are trustworthy. Peer to peer support and shared learning is extremely helpful.”
  • “Ask your friends to help!”
  • “Never quit advocating.”
  • “You can never truly prepare yourself ahead of time for the shock that comes with dealing with this disease and the consequences of it.”
  • “I have also learned to be more charitable and live in the moment to survive without losing my mind and that a sense of humour will serve you better than a chip on your shoulder.”
  • “We are trying hard to maintain social contacts through things such as church, walking groups, community get togethers (we live in a retirement community), getting out to theatre events, shows and dinners with friends.”
  • “We need to have grace for people and realize there are often reasons we cannot see that lead them to act the way they do.”
  • “We need grace for our loved one; for ourselves; for family members who cannot visit; for the system of care that can only do much.”
  • “We need to keep advocating, learning and working to bring change – but with a mix of grace and a sense of humour – both for the health care system, our loved ones and even ourselves.”

April 2018 Provincial Lived Experience Café Live Chat Event Summary:

Participants:

Our April 18, 2018 Provincial Live (typed) Chat event on www.dementiacrossroads.ca included eleven lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury) as well as the input of participants from Trenton, Brighton, Kingston, Chatham, Toronto, Owen Sound, Perth, Ottawa and Mississauga, Ontario. Our topic question was:

Topic: Some people develop symptoms of cognitive decline or dementia earlier in their lives (i.e., before the age of 65). 

1. How do you think the experience of individuals with early onset dementia and their family care partners would be the same or different from those who develop symptoms later on?

2. What unique challenges do you see for individuals with early onset dementia and their care partners to access services in your community?

3. Do you think there is a different stigma for this group?

Key Findings:

For Question #1: How do you think the experience of individuals with early onset dementia and their family care partners would be the same or different from those who develop symptoms later on?

Key themes identified:

  1. Children: Families living with early onset dementia are often still caring for children, teenagers or young adults in University or College who still needed parenting, when they now need to be cared for themselves. A young carer often has to choose between their own life plans/dreams and providing support to their parents with little training or emotional support. 2. Finances and Loss of Employment: Families living with early onset dementia often have to leave employment before they are financially prepared. This often affects both the income of the person living with dementia and their family care partner.
  • “I imagine that it is even more challenging for an early-onset patient and the caregiver. The patient may be diagnosed while still employed prior to retirement, and the caregiver may also be working and additionally may be caring for their own young children.”
  • “Although no one is EVER prepared for dementia, it is especially challenging for younger families who are still working and have younger children and are less established financially.”
  • “Financial challenges would be a big one as well as caring for their own children.”
  • “This is incredibly difficult for younger caregivers as they are trying to create their own life.”
  • “I believe the people with early onset are at a different life stage and so the challenges are a bit different. I also think that our services are specialized and very attuned to the older adult. The early onset age presents with different challenges such as employment; family caregiving etc.”
  • “I was only 15 when my Mom was diagnosed, so I was in the dark about a lot of her symptoms. But it got to a point where my Mom was no longer able to teach (she was a high school math teacher). Her students were complaining and it wasn't a great situation in the end. That is really what started the ball rolling on a diagnosis.”
  • Early onset dementia is difficult for the children. It can cause guilt and tension especially between siblings. Within my own family we have all taken turns going away from school. But keeping up with caregiving responsibilities can be difficult with exams to study for!”
  • “Young or older, even when someone finds a program the transportation costs and logistics can be a challenge.”
  • “It can hard for people who are physically fit and mobile to qualify for transportation to programs. This is especially true for younger populations - and they live much longer with the disease.”
  • “I see many caregivers struggle to coordinate care and maintain employment. Day programs do not run all day and do not encompass the caregivers entire work day. Coordinating all of the logistics can be a struggle.”
  • “Not possible to hold down a job!  Also, early onset ensures a longer stretch of caregiving. I still wonder about the conventional thinking that Alzheimer's patients have an average life span left of approx. 7 years. My Mom was diagnosed at about 80. Now she's 93 and still around, relatively strong.”
  • “I hear all the time from people that even with Adult Day, they still had to quit their jobs just to coordinate and manage everything - especially transportation and early/later hours.”
  • “I think a dementia hot line would be helpful for any age…but a hotline for young caregivers to “vent” frustration, anger, sadness might be useful.”
  • “Early/young onset is likely much more unexpected. It can interfere with employment and force “early” retirement which is not like any retirement we might have imagined. The care partner definitely doesn’t retire but takes on a whole new demanding role. Some of us have preparation based on careers in health care but for some it is a brand new role. Finances may be difficult for some adding unexpected strain.”
  • “GAIN teams and Memory clinics are great too if you have them in your area. They have practical advice and people who really know their stuff. However I know for early onset care partners this requires them to have flexible employment so they can take time off work to go to these appointments.”
  • “As a person who has worked for many years in the dementia field, I am very humbled by now being a caregiver and working full time. I thought I knew things - but I didn't.”
  • “I miss being “mothered” and am sad my mom can’t experience her grandchildren…that must be 100 times harder for young families who still need to be mothered and raised.”
  • “I think the hardest part is knowing my Mom won’t be at my wedding or around when I have kids. That is very difficult!”

 For Question # 2: What unique challenges do you see for individuals with early onset dementia and their care partners to access services in your community?

Key Themes Identified:

 1. Challenge Getting a Diagnosis; 2. Difficulty Accessing Services and Treatment; 3. Difficulty Accessing Age Appropriate Services and Supports; 4. Lack of Counselling, Emotional Supports and Education for the Person and Family Care Partners.

  • “Care is also very senior based. My Mom is only 57 and she attends a Day Program that is named "Senior Life". Getting her to agree to go to a day program was so difficult because she felt she didn't belong there. No one else was close to her age at all!”
  • “It was a challenging time for sure. I didn't really know what was going to happen, none of us really did. And I found is so difficult to tell my high school friends about my Mom.”
  • “The people with early onset don't necessarily fit with the older adults so services/programs are not necessarily a good fit.”
  • “Also challenging for attending an Adult Day Program. Most clients there are older.”
  • “My Mom's Day Program is fantastic and I know she has gets to do a lot of fun activities and amazing crafts. Unfortunately, not everyone is lucky enough to have access to amazing services, and sometimes finding them is so difficult.”
  •  “Thank you for talking about the great program your mom attends. There are some very person-centred day programs that focus on personhood to ensure meeting the person where they are at no matter what age.”
  • “Adult Day programs and LTC do their best to accommodate people who are younger - but it is not easy.”
  • “Another large challenge is getting a diagnosis. It is often overlooked or chalked up to stress or other situations/illnesses. It's not always what people are expecting, not even doctors.”
  • “Geriatric services are the most experienced with dementia. One isn’t usually eligible until age 65 so immediately the early onset are in a difficult position. This may limit referrals to mental health services that could facilitate proper medications to improve quality of life for both the patient and care partner -it’s not unusual for the younger onset to be otherwise quite healthy. This adds an unexpected twist that the length of the illness may extend for many years. However when one is losing one’s mind, an extended life expectancy isn’t necessarily a plus.”
  •  “My husband was diagnosed with a dementia at age 63 (considered early onset) it was tough getting services because he fell in a gap. Also there is a sort of denial when someone is younger that maybe it's not dementia....this can be especially true for the person who has the diagnosis....though I find myself still wondering (6 years later)....maybe it's Lyme or, or…”
  •  “We really don’t have suitable care facilities for the young/early onset group. We all generally “hang out” with our own age cohort. The average age in Our LTC facilities is well into the 80’s. Not easy for people in their 50’s and 60’s to feel comfortable.”
  • “Getting a diagnosis would be a challenge. Given your mom's age, I wonder how many times things were chalked up to menopause; stress; midlife etc. You are so correct, it is important to listen to the person's experience as there are no blood tests to confirm a diagnosis….they would be looking for everything BUT dementia.”
  • “My siblings and I were so busy with sports one night and other activities the next, appointments and other family commitments it was so easy to say it was stress or just a mistake that she forgot an appointment or thought it was a different day!”
  • “At first, it was depression and coupled with that (typical) lethargy......I thought there are reason for that behaviour it wasn't until 2 years later that (and as I look back now) that he began to spend money in ways he never would have before. Then executive function issues became very apparent and hoarding plastic bags and Kleenex and paper napkins along with confusion, getting lost and easily overwhelmed.” (Denial and Disbelief).
  • ‘An additional concern is ensuring that kids and teens who are affected understand and get support. Not only do they lose a caregiver but also become called to additional responsibilities. This is particularly hard as early onset starts as an invisible disability.”
  • “Diagnosis would be harder early on. Also, transportation is a big issue, esp. for the caregiver trying to get themselves ready as well, to start their own day.”
  • “Our clinicians are counseling young family members which are out of their realm of usual counseling. The young caregivers have different issues than caregivers of a different cohort.”
  • “Young carers don't have very many services that are geared specifically for them! But also transportation would be needed for many young carers to get to those services. It can be exceptionally difficult to make connections with other young carers and thus you feel very alone.”
  • “This disease isolates both the caregiver and the person with dementia AND caregiving is a full time job even early on just trying to navigate the system.”
  • “And a layer of complexity, it can be difficult for young carers to attend school and further education or pursue career paths due to caregiver or maybe just feeling guilty about not being around.”
  • “The responsibility of becoming a caregiver sort of hijacks everyone’s life, but as a younger person just beginning your adult life it is like getting sideswiped. It impacts your whole future in a way that older adults could never fully understand.”
  • “It would be easier if they had a “dementia hotline” you could call to get information on services or answers to questions. I know they have similar ideas in Europe.”
  • “They are to be opening a similar village (to the one in Holland) in BC, but the costs are going to be very high and it won't be accessible to a large majority of the population - especially if you look at it through the lens of someone with young onset that may not be financial stable.”
  • “Not many young carer support services that I know about, however there is has been more talk about young carers on recent. In Waterloo, I work with a Young Carers Project that provides education on the existence of young carers. We have been working with the Change Foundation and they are really helping us get more recognition for this invisible population!”
  • “In my experience as a clinician, often the first to notice a change in the person is their employer/co-workers. And when concerns are brought forward, it is difficult for the family. In terms of responsive behaviours, I can't imagine not working at my age and having my family try to convince me that I no longer work would be a challenge for them.”
  • “We were connected early on but the resources weren't really geared towards young onset and my siblings and I didn't feel very connected. Luckily we have a great geriatrician, who gives us a lot of support. Otherwise we just go with the flow and learn as time goes on. I have learned a lot through my work with MAREP too!”
  • “One other point to make. There are not always the same services available in every LHIN. Halton/Mississauga had many services which made it easier for us….this would not be the case in smaller or more remote locations.”
  • “Some regions also have to plan services to cover a larger geographic area which can be challenging… In rural areas, some resources are scarce. We have to do more with less.”
  • “Intimacy isn’t talked about very much. For some, changes in this part of the relationship may be a signal that something is wrong. It’s unlikely that dementia is thought of. More likely is concern about the “health” of the relationship being at risk, often after many years.”

For Question # 3: Do you think there is a different stigma for this group?

Key Themes Identified:

 1. Isolation and Loneliness for Both the Person and the Family Care Partner; 2. The Need for a Public Education Strategy and 3. The Stigma linked to long term care and “old age homes”.

  • “I would think the social issues are different for folks with early onset. The diagnosis is not as acceptable (for lack of a better word) than it is for someone who is in their 70’s or 80’s.”
  • “Is it stigma or just lack of knowledge?”
  • “I think there is stigma for all ages. Earlier means more people see it or don’t see/understand it.”
  • “I believe people don’t know what to do with it. Re: Stigma. Fear or ignorance speaks to the need for education.”
  • “I am friends with 90 year olds who do not want to go to the "old age home". Can you imagine how it must feel for the person living with early onset dementia to hear that you have dementia and are more than likely going to go to Long term care and also for any care partner to be robbed of their golden years? …The stigma of Long Term Care is an important aspect.”
  • “Just the nature of the disease can be so isolating – well not the nature of the disease, but how people react to it.”
  • “Yes, Isolation and Loneliness…both the person and their care partner can feel very alone and misunderstood.”
  • “We find friends and family are not coming to visit because their perception is that we are too busy and too tired to entertain – this speaks to the isolation.”
  • “Friends disappear. Socializing becomes difficult. Caregivers need more support and respite.”
  • “Many people ask how the person is doing, as though they will get better…It may be those with no experience don’t know what to say to both the person with dementia and the caregivers. It makes them uncomfortable and they may not want to say or do the wrong thing.”
  • “I wanted to affirm the significant stigma experienced by the individual and family members. In this regard, an area of assistance would be helping families with the language to express what is happening and what sorts of help they could use with extended family, church communities and other community groups. It is often hard to articulate.”
  • “Perhaps as an advisory we can set up the message to help people that do not know - understand?”
  • “You know many people don’t understand mental health issues. The “Let’s Talk” campaign is shedding some light. Epilepsy is another thing that is not understood. We need a campaign for this!”
  • “The Alzheimer Society has a campaign called "Yes I have dementia. Let me help you understand."https://ilivewithdementia.ca/​?s_locale=en_CA&utm_source=websit​e&utm_medium=hotspot&utm_campaign​=AW2018
  • “A Public Health campaign could have significant influence…television, commercials, billboards, YouTube videos…the list of opportunities is long!”
  • “I am in a co-op program and I have the pleasure of working at the University of Waterloo for the Murray Alzheimer Research and Education Program (MAREP). I am doing my second co-op term there now and in my first term I was introduced to the “Young Carers Project”. They do not support young carers directly, but it is more of a working group to increase awareness in KW.”
  • “Those elder abuse commercials were quite impactful…perhaps we need a focus of public education like that. This could be another opportunity to explore and search for funding.”
  • “I find many people think dementia is just memory loss and do not have any understanding about responsive behaviours. Families are dealing with loved ones who really are not safe to be alone for long periods of time.”
  • “People are also "afraid of dementia, like they use to be scared of cancer.”
  • “My husband was let go from 2 jobs (that had never happened in his career) but no one seemed to feel that his spouse (me) should perhaps be informed and some of his colleagues had known us both for years!! I was really angry about that.”
  • “I’m not sure there is stigma, however gradually you can’t participate with the normal activities of your friends so isolation can set in. And of course, we can’t forget the impact on the “children” of early onset who are often in their 30’s and 40’s and busy with careers and young families of their own. All adds up to a very stressful time.”
  • I will always remember a man in one of our support groups who is living with dementia. He looked me in the eyes and said, "As soon as I was diagnosed with Alzheimer’s, I became invisible. No one talks to me, asks me what I want or think as if I can't think or speak anymore." It stuck with me. We can so easily overlook a person - and if they are young - that's a long time to be invisible….invisible and isolated.”
  •  “Talking about campaigns, using popular media is a great way to raise awareness. A few documentaries have come out in recent that highlight young carers. One specifically about dementia is called Much Too Young, which follows 4 families with early-onset Alzheimer's disease. (My Mom and family are in this one - so a bit of a plug to go watch - it's great - but I'm biased.)”

For information about how you can participate in future Lived Experience Café chats or Lived Experience video/teleconference advisory conversations, visit the Ontario page on www.dementiacrossroads.ca  or email Sharon Osvald, BSO Lived Experience Facilitator at sosvald@alzking.com . Sharon can also be reached by phone at 613-475-9943.

 

May 1, 2018, SE Ontario Lived Experience Chat Question

 Feedback received from nine lived experience advisors who live in Brighton, Belleville, Perth, Kingston, Gananoque and Brockville.

BACKGROUND:  In April 2017, the Ontario Government announced their Ontario Dementia Strategy with approximately $100 million allocated provincially to support people living with dementia, their care partners and their families have access to the resources and services they need to live as well, and for as long as possible at home and in the community. 

QUESTION: In anticipation of each LHIN receiving notice of their portion of this provincial funding, the South East LHIN & leaders across the system of care would like to hear the perspective of Lived Experience to ensure system planning aligns with and supports the needs in the community:

  1. What do you see as the biggest gaps in community services in our region?
  2. What do you feel would be the most helpful to allow people to live at home safely for as long as possible?
  3.  What are some innovative services, supports, programs or approaches that you are aware of that should be considered to help people living with dementia and their families?

Key Findings to Question #1: What do you see as the biggest gaps in community services in our region?” 1. Access to Transportation and the Cost of Transportation; 2. Geriatric Emergency Room & Hospital Support; 3. Education for Family Care Partners and Public Education; 4. Respite and more flexible support options; 5. Navigation; 6.  Better Care for Early Onset; 7. BSO Mobile Support in the Home and Community and 8. Counselling and Social Work for Families.

  • “Transportation is an issue I hear about all the time in our support groups – and the difficulties of getting their family member to the day programs. Maybe we need satellite day programs at community centres?”
  • “Gaps include day programs in smaller communities are only available 2 or 3 days per week and have quite a large area that each program covers. Huge problem is also cost of transportation.”
  • “I live in a rural setting and volunteer for a local senior’s organization. I see transportation being a problem for many seniors especially in winter. The organization where I volunteer offers many social activities, but many seniors can't attend because they don't have transportation. There are some volunteer drivers, but not enough. In the city, I would like to see bus routes extended to streets off of the main routes. Perhaps smaller buses could be used for these routes. This would mean the buses would be able to drive to the door of seniors. Therefore, more funding is needed for transportation services, both rural and urban.”
  • “My answer would be sufficient and appropriate care for older adults living with dementia and their families when they have to go to the hospital. They need more Geriatric Psychiatry and supports flagging their dementia, delirium and that they are put on the right medications and right treatment plans - not just caring about where they will be placed. If this support was in place along with support and information/education for the family care partners that would make a huge difference in how long people could stay in the community.”
  • “Respite...would be best if the client could stay in their own home so as not to confuse them any more than necessary....otherwise people like me seldom got a break unless we could get untrained family members to come and stay for a day or two.”
  • “My husband has had dementia (frontal lobe) for approx.. 5 years. His memory is very good & he can help with small chores around the house; emptying the dishwasher, carrying groceries in the house, garbage removal, etc. He has a shower every morning by himself; twice a week a PSW comes in to ensure he uses soap & cleans himself as he gets annoyed when I ask him to use soap. Twice a week a gal through the SMILE program comes to take him out; one day for 2 ½ hr. and one day for 1 ½ hr. I am thankful for that support but it is not nearly enough.”
  • “People need way more than 4 hours of respite a week if they are going to do this for the long haul. That is something that needs to change. If I didn't have any other health care or PSW's I would want one 4 hour visit per week to go to their support group, shop get hair done and then say a weekend or evening visit at the $6.00 an hour rate -even if it was just 2 hours to go to dinner or movie or have a night out.”
  • “I got the 4 hrs in-house and was able to get 3 days adult care, but after 3 years of caregiving 24/7 and only 3 weekends I can remember… I was toast!”
  • “I had a family member say to me, recently upon diagnosis, the first thing they were told was to go check out LTC homes. It seems like they don't have understanding of day programs and what they entail. Some people have never even heard of in-home respite. We tell people they should stay home longer - but we don't really show them how to do it.  I think agencies may need to start putting public service announcements on the radio and in papers.”
  • “In our case, there were three issues: he was "too young" no services available even for diagnosis, he had high anxiety that was not handled properly with meds as the "normal " meds did not work and the Psychiatric Ward where he ended up having little experience with dementia re meds. All of this made for an ongoing crisis lasting more than a year.”
  •  “I see the gaps as: more access to adult day programs, transportation, more respite time...and more creative respite solutions - not everyone needs a bath! More programs that offer practical help like SMILE program etc. and better access to care for younger/early onset folks.”
  • “Also, better coordination with geriatric psychiatry for people who are living at home and some kind of community “mobile BSO” supports for families!”
  • “There was no mobile BSO when everything went down for my husband, I think that would have been a big help…and mobile BSO for families…that would be excellent!”
  • “Counselling and social work for family members …the same one all the way through the process…for issues like grief and loss, family dynamics, coping skills and dealing with long periods of stress.”
  • “Grief is so ever present in this disease…It is all so tiring. I read a quote the other day: “The time I miss you the most is when I am sitting right across from you.” So true.
  • “Navigation!!! Where do we go?”
  • “The biggest gaps in community services in our region would be that I was not aware of who I could turn to initially when my mother started to become less safe driving her car.  I think I happened to ask my family doctor about it.  He mentioned calling the Alzheimer Society. So, that is what I did. And, on meeting with them, I felt more empowered and was able to decide what steps to take.  I do not think there is enough education of the public with regard to how to get in touch with services, thinking of outreach from the SE LHINS. Also, the senior driving program is not very great, when it comes to testing ability of seniors, e.g.  Ministry of Transportation has tests that rarely test for driving and competency in driving.”

Key Findings to Question #2: What do you feel would be the most helpful to allow people to live at home safely for as long as possible? 1. Increased Education about Dementia and Non Pharmacological Approaches to all Health Care Staff who interact with Older Adults; 2. More Affordable and Creative Retirement and Assisted Living Options that Keep Spouses Together; 3. Increased Respite and 4. Better Training, Pay and More Streamlined Shifts PSW Staff.

  • “I hear from PSW’s that many are quitting early on. Some are obviously not equipped for their training to take care of such complex people.”
  • “I think higher wages are needed for PSW’s and DSW’s as the level of care and responsibility is a lot higher than people acknowledge.”
  • “I would love to see the PSW training like an engineering degree from Waterloo. 4 months classes, 4months on the job, 4 months more classes, 4 months on the job...etc until they have a degree of proficiency that makes them capable of giving loving support to all types of seniors in need of help. Then pay them properly and schedule them fairly and they’ll want to do the job.”
  • “Yes they need to be paid for the care I expect from them …they are the front line caregivers in many aspects… I recently read there are a high number of accident claims from PSW's who are running the roads trying to do their jobs and getting burned out with long shifts and emotional issues that caregivers will encounter…better pay, better training and more streamlined shifts closer to their homes and better coordination will make a difference for everyone affected.”
  • Perhaps PSW training specializing in Dementia would be a possibility. My mom is independent in her physical needs, but requires a compassionate, skilled approach in her mental health. Also, more funding is needed to pay PSWs a higher wage and more comprehensive training.”
  • “The first is safe administration of medications at home. This is not a service that the South East LHIN offers; secondly, we still don’t have enough transportation options once people give up their license. The third consideration is a facility that is affordable and offers several levels of care. We have couples who are looking for a long term care home for one partner and Retirement for the other.”
  • “Respite and Education for Staff are my answers to the first 2 questions is that caregivers need respite for their spouse. We caregivers don’t necessarily want to go outside our homes for respite ourselves as that just adds to our stress (where to go, making plans, travel, etc.); we need somewhere safe for our spouse to go & be cared for while we have a rest. I have very little family support, and what we do have is emotional rather than hands on. I recently had my husband go to  a beautiful retirement home here for respite. He was meant to be there for a month (at $125./day) however he was sent home a week early due to ‘non-compliance’. He was argumentative with another full-time resident; he wouldn’t change his wet pull-ups, and was a little aggressive with one of the servers once. All of which could have been handled with staff who are trained to deal with people with dementia.”
  • “Education!! Families need more education at all stages of dementia and the ability and knowledge to adapt the home and caregiver to the challenges as things progress…forewarned is forearmed.”
  • “Retirement Homes do not require dementia trained staff…this is not realistic.”
  • “Families need training – about the disease, how to cope practically with communication and “positive approaches” AND those who support us with respite care, hospital care, adult day, home care NEED more training so they aren’t constantly triggering the person or offering care solutions that make things worse not better.”
  • “Teepa Snow Positive Approach to Care training is an excellent tool. I really enjoyed that.”
  • “Hospitals need more education about delirium and geriatric nurses/management in Emergency Rooms. That is often where unravel and get the wrong treatment.”
  • “There is a real strain on retirement homes. We need more creative assisted living situations – that keep spouses and families together.”
  • ‘My husband is near the top of the list for long-term care but, had I had a month or 3 weeks respite every 3 or 4 months, I would have been able to get a rest, recoup and be able to have him at home for a much longer period of time.”
  • “My husband is not aggressive with me and the main problem is his toileting problems and daily care; i.e. meals, laundry, personal hygiene, medication, medical/dental appointments, etc. coupled with my having to deal with all other aspects of our lives; home maintenance, finances, car maintenance, driving, plus my own medical problems which are worsening because I don’t have time to rest & take care of myself. It is not fair that he has to go into long-term care because I am exhausted. It is not fair to have financial strain on our lives. If the province is allocating $100 Million dollars, perhaps a portion of it could go to providing respite.”
  • “Programs like Adult Day Programs, the Smile Program, and Diner’s Club with CPHC are all really helpful.”
  • “Increased funding through the LHINs for extended daily hours for PSW support. My mother was in crisis while waiting for a bed in long term care. She was given 8 hours of free service a day during this time, but that left 16 hours each day that had to be covered by private care. It was very expensive.”
  • More education for families on what to expect with dementia. How do you respond when your mom is talking about her husband and/or mother as though they were still alive? I wish I had known more then. I would not have corrected her. I would have responded to her differently in order to lessen her anxiety. I have learned this from reading on my own and seeing how much easier it is for her and for me. Education on antisocial behaviours, etc. would be helpful. I know the Alzheimer's Society offers many programs, but more is needed.”

Question #3. What are some innovative services, supports, programs or approaches that you are aware of that should be considered to help people living with dementia and their families?

  • “A gentleman from our Advisory shared an article about some creative living arrangements that are happening around the world and in Canada too…things like “intergenerational condos” where people can move in with their parents in a supportive living situation.”
  • “Memory and Motion is a great program (keeping people active and social so they can stay home and be healthy and independent longer) as well as the Positive Approach to Care education for family care givers.”
  • “Falls Prevention programs in and around the house – including exercise programs are very helpful.”
  • “There is a program in Europe somewhere that has students living in the same building as folks with dementia with free rent for the students trade for spending time and doing chores for them?  Why can't we have that while folks are still at home, have a student live in for trade or student rent subsidies?”
  • “If you could get funding to hire your own live-in student or whatever respite solution worked for you…even if it was a family member or friend that would be helpful. We need to get creative and flexible and we need to find a way to keep spouses together as long as they possibly can be.”
  • “Community Care volunteer drivers, Meals on Wheels, Friendly Phone Calls to check in on people…all these things really help people stay home longer.”
  • “There are many innovative programs offered by the Alzheimer Society. I also appreciate the Diner’s Club for seniors and having a hot meal at mid-day. I also think Day Programs is very helpful with caregiver support and to people living with dementia.”

Prepared by: Sharon Osvald, Lived Experience Facilitator

Providence Care Seniors Mental Health/South East Behavioural Support Services & Behavioural Supports Ontario Provincial Coordinating Office in partnership with: The Alzheimer Societies of SE Ontario & brainXchange

www.dementiacrossroads.ca

Email: sosvald@alzking.com

Home office: 613-475-9943

Exchanging Knowledge, Partnering for Change

 

 

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