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The Lived Experience Cafe chat

December 2016- January 2017 Resource Exchange Summaries

Summaries Resource Exchange:

Who? 

This Lived Experience Resource Exchange for December 2016 and January 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 thirty-six people from across all of South Eastern Ontario. Thirty-four people were spouses, adult children, family or friends and two people were older adults living with a dementia, mental health or other neurological disorders. 

How?

Advisory conversations in December 2016 and January 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 www.dementiacrossroads.ca . Participants were invited to share their input – not as a complaints department – but from the view of making things better.

December 2016 –January 2017 Resource Exchange – SE Ontario Lived Experience Network 

December 2016 SE Ontario Live Chat Summaries:

TOPIC: Come prepared to share some of your personal observations from where you are at in your journey as a care partner/ someone living with dementia, mental health, substance use or other cognitive impairment. Where are the gaps? What's working well and where do you need more support? We also welcome you to share some of the lessons you've learned along the way that have made things easier

Key Themes:

Sufficient Peer to Peer and Group Support

  • “I am a member of a male care givers group. We meet once a month and it’s been very helpful in both providing information as wells support. Unfortunately we haven't found a similar support group for my wife (living in early stages) yet.”
  • “Unfortunately, I did not find the Alzheimer Society of great help to me since my husband was young and I was working full time. Many of the programs were during the day. I did find  the one group Women who Care which meets monthly in the evening did help for sharing and getting info.”
  • “Grief is truly an individual thing, but we all feel it and will have overlapping feelings. I find talking to people who know the situation helps me.”
  • “Talking to people and sharing the burden. I guess that is partly why we are here tonight.”
  • “I went to a support group for widows when my husband went into LTC and it was ok but did not really address the twilight zone that we have to deal with dealing with dementia.”
  • “I think there are some important differences if one is young and struck with dementia. One is children are much younger. The spouse may need to continue to work. Financial impact may be different. The mobility of younger residents is greater. My husband walked until the day he died. The activities and music should include more current things - ie computer games and current pop music. This is just some things that should be considered when dealing with the whole person and supporting them and their families.”
  • The information you learn in support groups is excellent and it’s nice to hear from someone who has been down the road.”
  • “Some of the programs cannot translate into younger people living with dementia. We need to adapt knowledge but also the programs need to shift as well.”

Coping with Grief and Loss:

  • “I would say there is a definite gap in the Alzheimer Society for offering grief counseling, coping strategies etc.”
  • “Everyone in the caregiver’s group I attended are all trying to deal with this basically alone.”
  • “For grief, I have cried and cried when talking to my sister but I also do exercise with a group most days, try to do things to get my mind off thinking. I write about funny and sad situation my husband and I have experienced. It is very individual.”
  • “I am referring to the little losses along the way. We used to go out to dinner Friday night. We used to go shopping; we used to go to bingo now we don't do anything anymore. There is a word for this kind of slow grief, but I forgot what it was called.”
  • “It is a gradual loss while the person is still living - very hard. I share this with you.”
  • “Definitely. Everyday something else goes. Sometimes it is a surprise what my husband had loss and other times I could see it gradually fading away.”
  • “Sadness is unfortunately a big part of this disease. We lose too much too quickly, then it is there and you savour the moment they are somewhat themselves.”
  • “We try to focus on the things we can still do instead of the ones we can't do. Also exercise and maintaining your social networks helps.”
  • “I tried to get some grief counselling... but it is not available until after mom passes away. I won't need it then.”
  • “I needed the help while my husband was alive almost more than when he passed.”
  • “I was able to get counselling through the hospice. Try calling one, they even came to visit in house.”

Navigation and Consistent Access:

  • “I frequently hear about problems "getting" a diagnosis. Our journey started in Kingston then to Ottawa and then to Toronto. It was misdiagnosed as vascular dementia in Ottawa and the Kingston contact just disappeared (off sick I hear) and no one at the office got back to us. The G.P.'s don’t even seem to know where to turn sometimes”
  • “It’s too bad there wasn't a centre for diagnosis and treatment attached to one of the health centres where everyone could be channeled.”
  • “Not getting back to people is a real gap. I am hearing that all the time from friends. People get “seen: and then often feel like they dropped off the earth after that.”
  • “That is how I feel about the neurologist, we have not seen him in four years.”
  • “It took several years for my husband to be diagnosed as he was young and they had to rule out all sorts of other things.”
  • “You have to be the squeaky wheel just at a time when you don’t have the energy for it. Having to make repeated follow up phone calls because they don’t call back or have the wrong info/outdated phone numbers.”
  • “Our diagnosis spanned a period of about two or three years. We changed G.P.’s because the original one who had been our GP for thirty years didn’t seem that interested.”
  • “Our neurologist is very good on follow up. We have been included in three studies and she initiates follow up assessments every six months.”
  • “I would like to have had more follow up and research done on my husband (but didn’t know how to get that) because his condition is so out of the blue.”
  • “One thing that struck me as odd is that Ontario is just starting to develop a dementia strategy but Quebec and BC already have one. I understand the federal government announced that they were going to develop one as well. Wouldn’t it be nice if we as Canadians just have one strategy and then get on with providing assistance to those dealing with this disease.”

Education and Supports for Staff:

  • “I am learning that more education for LTC is necessary as well. PSW’s and nurses don’t always know how to handle the behaviour of dementia patients.”
  • “In every area of work PSW’s and nurses lack dementia training…hospitals and when they go into people’s homes.”
  • “PSW’s need better pay too. How do you build up a competent and educated work force if you don’t give them adequate pay or hours. This is a real gap.”
  • “In the hospital one staff told me since my wife wasn’t on medication for dementia she doesn’t have it!”
  • “It needs to be a priority to get these people training…and enough support.”
  • “Hearing aids are my pet peeve; I was told maybe they should only be in when family visits. Very few staff members know how to ensure they work, insert properly or change the battery.”
  • “More education = less medication I think.”
  • “I think the Ministry sets up LTC Homes to fail sometimes – imposing unrealistic expectations with not nearly enough staffing or education. The same goes for PSW’s in the home and hospitals. Then when they fail, people point blame at them as being the problem when really the problem starts at the top and trickles down.”
  • “Our Family Council is constantly advocating administration about staffing but they are above the ministry standard!”
  • “Perhaps the Ministry Standards need to change!”

Supports that Work Well:

  • For me, my social worker, when I had her…was a huge source of support. I can still call her and she is always knowledgeable, helpful and supportive. Every caregiver needs to be assigned one.”
  • “For me it is some of the really great staff at our LTC home. They really care about my Mom and me too. They take that extra time. More of them are like that than not – so I am very fortunate.”
  • “The LTC people are great and have been wonderful. I cannot count them out.”
  • “My support groups with the Alzheimer Society have supported me. They will accept me when I am available.”
  • “I agree the Alzheimer Society is great!”
  • “The Council on Aging has been a huge support to me. They do this with peer support volunteers, the elder abuse hotline, provide support and information for seniors whose financial, emotional and/or physical safety may be compromised.”
  •  

December Provincial Live Chat Summaries:

The December 14, 2016 Provincial Live (typed) Chat, involved 13 participants from Sudbury, Timmins, Kingston, Belleville, Toronto, Thessalon, Perth, Cloyne, Brighton and Waterloo, Ontario on www.dementiacrossroads.ca

 In this session, participants were invited to share their input on the following topic:

December’s Live Chat Question:

What are the ways that you create meaningful engagement around the holidays when supporting someone living with dementia or mental illness?

  1. How have your holiday traditions changed/been modified to meet current needs?
  2. What are some practical tips and strategies that you’ve found to be successful?
  3. What are some of your key lessons learned and most valued supports during this time?

Key Findings:

  1. How have your holiday traditions changed/been modified to meet current needs?

Simplify: Participants recommend various ways they had adapted previous activities like shopping, cooking, decorating and gift buying in order to keep things more simple and manageable.

  • “It helps to keep things simple as those with dementia are easily overwhelmed and stressed.”
  • “I have to be cautious not to fit too many activities into the day to keep the anxiety level at a manageable level.”
  •  “In the past I have put a small 1/2 Christmas tree on the wall.”
  • “Adapting our visiting helped too. Everyone coming at once was too chaotic, so the tradition was adapted and I bring the grandchildren on a different day.”
  • “Simple things like singing a song or a hymn was our way of connecting.”
  • “We have gone to “cash gifts” this year. It is not as exciting but it sure is less stressful and I think the kids and grandkids appreciate the cash. That way they can enjoy the Boxing Day Sales.”
  • I agree – cash as appreciated gifts. It is also really good for my blood pressure and for not having to make returns or exchanges.”
  • Order Pizza and Sushi if that’s what you think you can handle. What laws says we have to have turkey or ham?”
  • “I hear from a lot of people that they just order Swiss Chalet, get their meal catered or ask the family to do potluck. Keeping it simple is less stress for already stressed out people.”
  • “Embrace little mementos like a special ornament on the Christmas tree to honour the person we love when they can’t be present. These bring back warm memories we can cherish.”

Adjusting traditions- so still enjoyable but more manageable:

  •  “This is the first year we are shifting our Xmas eve and Xmas day activities to our daughter’s house. Fortunately, we all live in the same city so travel’s not an issue. It should be much less chaotic and if we need a break we can come back to our house.”
  • Our family stopped giving gifts to each other a long time ago. If you’re coming for dinner you bring a wrapped gift of predetermined amount and then we play a draw game.”
  • At our house the best git of all is time with the family (seven grand kids ages 6 to 14).”
  • “One thing we did was set a limit of $5.00 plus tax for presents. They are really funny and pointed but easy for everyone to afford. Great to take my mom in the store and turn her loose. She loves the small jokes.”
  • “When it comes to gifts, the gesture is the important things – a picture and picture frame with a label (without the glass) or a small ornament to hang on the door.”
  • “We have a group of ten who go out for dinner every New Year’s eve. A couple have mobility issues, so this year we are going to someone’s house and ordering pizza. Nothing fancy but I think it will be more fun.”
  • “Another suggestion was making Memory Boxes and changing them from time to time and the season.”… “I just found a link about memory boxes: http://www.alzheimers.net/2014-02-06/memory-boxes-for-patients/
  • “The long term care home has a Xmas market and everyone loves the shopping experience! In fact we find the shopping day to be time well spent together vs a Xmas dinner.”
  •  “This year our home did a “light the night” with hot chocolate and cookies and singing, then 27:30 the lights in the backyard were switched on.”
  • “In later stages be cautious with decorating and making sure the person feel disoriented in their environment.”
  • “Last year, I left for the nursing home first thing Christmas morning, after my grandchildren had opened their gifts. I arrived just after Mom had breakfast, we spent the morning laughing sipping mimosa and I curled my Mom’s hair. She got all dressed up in her holiday attire ready for Santa to pay a visit to the nursing home. Residents, staff and family members gathered in the large activity room, the fireplace channel was set on the t.v. and presents spilled out from underneath the tree. Santa and his elves handed out gifts to each and every resident and then Santa took the time to take individual photos with all who wanted to participate. I sent the photo of Mom with Santa to all my Siblings and all her Siblings wishing everyone a Merry Christmas from Mom. That memory will stay with me forever, it is making me smile now as I type it, even a year later.”
  • “It only takes two times to change a tradition.”
  • “Once Mom moved here to LTC I would bring her to my place for late breakfast & our gift exchange. Then we would go out to Christmas dinner with all my in-laws. My mother in law was a PSW who had worked in LTC. She & Mom were friends. It would depend on how tired Mom was how long she stayed. Each year we gave the great nieces & nephews a piñata - they decided to have at before opening family gifts because she might get tired. Mom really enjoyed watching & laughing with them.”

Knowing the person and adapting to their specific needs:

  • “One story that was shared cautioned to decorate and un-decorate slowly. She shared that her parent woke one morning and the room was cleared of the decorations and she became frantic and disoriented. It took a long time to calm her down…lesson learned by the family involved.”
  • “Dad is now trying to eat anything he wants. I cannot give him wrapped candy because he doesn't know to remove wrapping.”
  • “Holiday traditions are ever changing. It is hard, really hard, to set aside what I want to be doing with my Mom in my heart and what is best for her. Mom has been in the nursing home for 6 years now. I always took her Christmas shopping, she came to the house to help with Christmas baking, she came and stayed overnight for 4 or 5 days during the holidays.  As the dementia progressed, coming out for Christmas baking was the first thing that had to be changed, it became too overwhelming. The overnight visits shortened. Last year we had to change to a day visit for supper only. This Christmas will be the biggest and most difficult change as I do not think Christmas dinner at my house is even possible.”
  • “Yes, our traditions did change and we had to accept the stages where my mother was. This involved changing from bringing to my home and to going to see her on Christmas Day and giving her presents there. This was tough to accept but part of the process of letting go.”
  • “I think knowing what our loved one enjoys is key. In our case it was babies and young children. Our mother didn’t seem to know who her great grandchildren were, but concentrated on them with obvious pleasure.”
  • “Help prepare visitors (especially children) ahead of time for what they may encounter- to adjust their expectations a little.”
  • “Try not to say, “Do you remember when…” This can frustrate the person living with dementia when we are trying to reminisce. Try to rephrase that.”

Guilt, Grief, Loss and Isolation:

  • When we finally decided not to continue bringing Mom to our home, I felt so guilty! We realized we weren’t doing it for her benefit anymore, but our own needs and wishes. We had to adapt for her – but I still feel guilty about that every holiday.”
  • “Guilt is the biggest thing to deal with sometimes.”
  • “Holidays tend to increase the guilt, the grief and the loss as we reminisce more about the way things were.”
  • “The guilt of not including her in everything we used to do as our family traditions is hard to control.”
  • “I struggle with doing things without my husband, but am realizing I need that sometimes. Dementia is very isolating. Even when people want to help they have trouble understanding. Finding meaningful things to do with our loved ones is an evolving challenge.”

Strategies:

  1. What are some practical tips and strategies that you’ve found to be successful?

Leaning on others for help:

  • “One family member shared that they book extra private care visitors to come and spend time with their parent in LTC when away travelling. This way they can know they are not all alone.”
  • “Early in Mom's journey with us my brother & I took turns hosting Mom for Christmas & New Year’s.”
  • “I have a strong support system with my husband and children. The second great support is the nursing home, they go above and beyond to accommodate our family luncheons, brunches and suppers.”

Staying focused on the present moment:

  • “I think it's about bringing the focus to this moment, this hour, this day.....and try not to want more than your loved one can handle. You/we are all dealing with the hardest job...caregiving for a loved one. Feelings really come into play.”
  • “My key lesson is trying to find a proper balance between what my heart wants and what is best for Mom at this stage of her dementia.”
  • “Things seem to always be changing. I think I just need to relax and try not to control the outcomes. They are SO out of my control.”
  1. What are some of your key lessons learned and most valued supports during this time?

Strategies to Looking after You Suggested were:

  • “Here are a few strategies for looking after “me” 1. Keep up exercise routine, 2. Make sure I get enough sleep, 3. Eat right and watch the extras this time of year. 4. Make time for family and friends and 5. Get out and enjoy the outdoors.”
  • “I find talking about it with people who understand and have been there (or are there) is very therapeutic, especially when extended family doesn’t seem to be on the same page.”
  • “I found great support from my sister, my husband and my family.”
  • “I live in a small town but with lots of churches. They seem to be able to ensure that every resident has time with clergy and LOTS of singing. The kids from daycare & public school are in. Charitable Association pays for a school bus to bring the high school choir for a visit -really good because most residents will have at least one grand or great grandchild in each group. Volunteers keep treats like cookies available for "tea" and of course we get to send kids home well sugared! (from someone who lives in LTC).
  • “One coping strategy is to dig for humour to be found in a situation. IT can involve very deep digging – but nuggets can be found.”
  • “If it’s not fun, don’t do it…It if has to be done, make it fun.”

 

January 2017 SE Ontario Live Chat Summaries:

January’s live chat came out of several of our face to face and online conversations, concerns have been raised about the manner in which assessments are conducted – whether it is for driving, cognitive or capacity tests, eligibility for services or Long Term Care take placement. Several of you have offered suggestions for how you feel things could be more consistent, compassionate and more comprehensive.

Come prepared to offer your observations about

  1.  What elements make an assessment respectful and supportive to the person (and family/care partner) as well as thorough and accurate?
  2. What are some practical suggestions for how assessments could be done differently?
  3. What are your thoughts on the process in which a person loses (and is told) they will be losing their driver’s license?

Key Findings:

Questions of Capacity:

  • “Long term care homes are referring to the attorney for personal care for making decisions without assessing the resident. An attorney for personal care is ONLY to make decisions on someone’s behalf based on the fact that they cannot make the decision themselves.”
  • “I don’t think the person should be treated as if they can’t make any decisions for themselves. Maybe they still can. My theory is that an individual must be allowed to make choices whenever they can and you would be surprised how many decisions they are capable of during the process.”

The Effectiveness of Screening Tools:

  • "While the MOCA (spelling?) is a great screening tool, it doesn’t really enough information other that “there is a problem” The next step should be to a more comprehensive cognitive testing, scans and a questionnaire for the caregiver. In our case there was a disconnect between the screening and the assessment.”
  • “I recall after one assessment regarding capacity for Long Term Care, wanting to ask them if they had remembered to ask her if she’d set the kitchen on fire recently. The family wasn’t involved in the conversation at all.”
  • “Because of “good days”, when the dementia takes a rest, some are able to ace the assessments. If tested the same the next day the results would be different.”
  • The assessments need some assessing.”
  • “We never had reassessments that went any further than the clock. My husband wouldn’t do the clock. He refused. I don’t blame him either.”
  • “Some are so irrelevant for the person. For example, copying drawings-my mother NEVER drew anything in her life...not even a smiley face on a note, so to have her try and copy 3D shapes was not a good test of her cognitive functioning. Just part of my angst. I WAS a psychometrist in my past life, so I know how limiting the testing can be, but that, to me, is an extremely limiting test.”
  • “My mother had advanced dementia, i.e. reasoning, hygiene, eating, speaking, but she could draw that clock long after she was moved to a secure dementia unit!”
  • “My mom couldn’t draw worth beans before the tests so her issues should be more rated on memory, daily functioning and language- not 3D. She couldn’t draw the clock but she could do the numbers backwards – go figure?”
  • “I know the clock is #1 for that generation telling time, but not the new generation of digital. Many youth cannot use an analogue clock and understand the pattern of numbers. I think it is certainly an antiquated (dated) test.”
  • “I'm no expert but I think the clock and diagrams in the MOCA test measure visual spacial function which resides in a specific area of the brain. If they do well in that section of the test it just means that part of the brain isn't impacted but other areas my be and that will show up in other questions. Again I think it’s a screening test not an assessment tool (which would be much more comprehensive).”
  • “The clock test helps identify some very specific areas of impairment; it is just a screening test that tells us a lot. However, I agree it will be antiquated for the next generation. I have also seen a screening test of “making change” that might replace the clock test – (although that is also a dying skill) – alternatives could be found.”
  • “I agree the skill-set testing is important but someone needs to come up with a more modern version.”

Support and Education Following a Diagnoses:

  • “Screening should be followed with a diagnosis and then comprehensive education that includes what the diagnosis means, what to expect as it progresses and typical time lines for that progression.”
  • “All I ever really knew was Mom had dementia. No idea how they came to this diagnosis, no real idea of the type of dementia, my sister thinks she heard somewhere along the line it was vascular dementia, but that is it. Early on, the nursing home was under a whole different opinion of why Mom was there. They did not recognize the dementia, thought she was terminally ill because of the lung cancer surgery she had.”
  • “My wife didn’t score well on visual spacial section or executive function but scores well in other areas. When the neurologist explained the results of the scans and the rationale for her diagnoses it all made sense – but I think our experience may have been an exception based on the other stories I have heard.”

Consistency in Testing and Services Offered:

  • “In our case, we had an Occupational Therapist do the testing that would determine driving eligibility. It was up to use to decide what to do with that assessment.”
  • “The screening will identify dementia, but doesn’t identify the type, proper medications or help family understand what they are facing. A central assessment and education centre seems intuitively to make sense and everyone in the medical profession should know where it is and how to access them through a referral.”
  • “I don’t get why some people see a neurologist, others a gerontologist, others an Occupational Therapist and others nothing. Things should be the same for everyone. The system should be doing a good job for everyone!”
  • “No one seems to get the same tests/ assessments done. It is so random.”
  • “I think these different approaches just demonstrate how disjointed the assessment, diagnosis and treatment of these diseases (under the dementia umbrella) are.”

The Attributes of a Good Assessment – Personal, Respectful, Compassionate and Taking time for Dialogue and Include the Input of Family and/or Care Partners:

  • “Our family doctor did a reflect test at the same time as the mini memory test to determine my husband’s ability to drive. He made it very personal for him by saying, “if your granddaughter stepped off the curb in front of you, you would not be able to stop before you hit her.”
  • “My wife has been in three research projects that require doing testing all over again and it is very draining on her. I’m not sure she’d volunteer again knowing that she had to go through this. The assessors did the best they could. I’m not sure how you could make it easier.”
  • “Family and caregivers have to be included. First they interviewed my wife and I together and then separately which was good. Once the patient encounters problems doing that section of the test, the assessor should move on more quickly rather than dwelling on that section.”
  • “My relative was showing signs of dementia. I called her family doctor and expressed our concerns – especially with her driving. Because I was not listed as next of kin, they said they could not act on my concerns. We let it go because we didn’t want her to become suspicious of us. As we suspected, shortly after she was at fault in a car accident and totaled her car. Fortunately, she did not injure anyone else and only sustained minor injuries.”
  • “We meet with our neurologist every six months. At each meeting I am asked to complete separately what I would describe as a “functional assessment” of my wife. It is quite interesting that I have noticed progression of the disease based on my responses. Typical questions revolve around daily functioning e.g. use of the phone, ability to cook etc.”
  • “My answers and my wife’s would be very different on the “functional assessment” hence the need to do them separately and then they can compare and interpret the results. I am finding as the disease progresses her answers are less accurate so independent validation by the care giver is imperative.”
  • “Wow, shouldn’t there be a “functional assessment” tied to every kind of test that affects a person’s independence and future?”
  • “When it comes to the perception test, somehow an interview with family is needed to see the person’s prior interests or strengths to see which is relevant.”
  • “Any good assessment requires such wisdom and compassion from everyone involved.”
  • “When being assessed for LTC, I found it difficult to say some of the things I would have liked to with my husband sitting right there, listening and watching us. I wished some of it had been private or at least in writing.”

The need for Clear, Cooperative and Consistent Practices around Driver’s Licenses that do not alienate those who provide care and those who receive it:

  • “I see the value of the Ontario MTO driver- turned- 80 tests. But I disagree with the can-I-drive-at-80 test, which test the same perceptions but not any driving test. These test need to include a driving road test.”
  • “I was told that our OJT was not required to report the results of our assessment to the MTO but if she provided it to our GP, they might be required to report the results to the MTO, and then they would revoke the license.”
  • “It seems again everyone is told/ experiences something different.”
  • “I think the bad guy needs to be the Ministry of Transportation of Ontario (MTO) as the family doctor still has to be trusted by the patient for future care, as does the family.”
  • “The doctor has to be the messenger, but not “seen” as the judge. Just let the MTO be the one who takes the blame.”
  • “If it is another doctor who does the testing, not the family doctor, whichever doctor they have to see again shouldn’t been seen as the one making that decision.”
  • “If a person has to go back to a doctor or specialist on an ongoing basis, it is not good for the person who needs their care to be suspicious of them.”
  • “I think the MTO decision and they should deliver the message – in a compassionate manner with supportive family/friends present.”
  • “The doctor can recommend no driving, but the MTO is the law for who has a driver’s license and they have the big bureaucratic shoulders to keep caregivers out of the upset. However, it needs to be done in a caring and compassionate manner with family present!”
  • “I know someone who went to a Memory Clinic. It was the very first time they had ever even begun having a conversation or accepting the fact they might have some memory loss and they were told that day they could no longer drive – not even home. Good luck getting him to visit that team again for a care plan!”
  • “This would have to be done in stages. It could cause major problems at the counter and getting a letter is bad enough. In stages – the doctor, the letter with the appointment date for turning it in and explanation about getting an ID card, right then not – not mailed to you weeks later.
  • The Driver’s License thing is horrible, partly because the staff at the registry is not well trained for this (like NO training) and I think it should be automatic that one is given an ID card to replace the Driver’s License that is relinquished. They need ID and are so used to having a card that says who they are and where they live that looks and is official!”
  • “I had to carry my husband’s passport…Not everyone can afford a passport and it doesn’t fit in your wallet.”
  • “We lucked out when we went to Service Ontario they recommended that we replace the driver’s license with an ID card that they have to issue.”
  • “I never realized how important having proper ID is to an individual until my mom got dementia. She asked me point blank, if something happened to her how would anyone know who she is? We can learn a lot but looking after some of the little things that we just take for granted like paper work that gives someone an identity.”

Assessments Need to Be Ongoing:

  • “For lots of things, the assessment needs to be an ongoing basis vs a huge test that makes you globally incapable.”
  • “Communication and relationships that is the key to assessment!”

 

December 2016- January 2017 Face to Face Advisory Conversation Summaries:

Education about Dementia, Managing Behaviours and Communication/Hiring more staff: Several participants felt there needed to be better education for staff who work with patients/residents living with dementia to learn how to manage behaviours and communicate effectively. They also felt hospitals, home care and long term care were all under staffed and resourced.”

  • “Some of the staff need training on how to communicate and approach dementia patients better. It is not easy – we know that- they need to be better equipped.”
  • “Budgets are tight, but they need more staff working – there are also too many part time and casual jobs. It’s not fair to the staff. I would honestly pay more a month to live here if it meant we could have more staff.”
  • “Hearing aids are a problem. Most of the time they are not in, they are put away somewhere or they don’t know how to put them in.”
  • We took my mom to an eye clinic in a city we were referred to. She has macular degeneration. The doctor got mad at her because she wasn’t answering his questions. He had no understanding of dementia!”

Don’t Know How or Who to Reach Out to when there are problems:

  • “I am walking a fine line every day of advocacy and fear of repercussion.”
  • “When there are problems with my mom’s care, it feels like I don’t know where to go or what to do. There is no one to go to that really “hears” me. It is so frustrating. I am not sure what the chain of command is, and I don’t want to be seen as adversarial or my mom might pay the price.”
  • “UTI is a real issue for us. I suspect one and days seem to go by before a test is done and time after that before it is confirmed and the antibiotics are given. In the meantime the consequences for my husband and I are just terrible – but if feels like no one is listening. The staff are all great…really they are…but there is a gap in the way this is taken care of for sure.”

Access and Navigation: Several participants shared stories where they were having trouble accessing services, getting the right professionals on the phone or to return their calls and not knowing where to reach out for help.

  • “We had a terrible time getting occupational therapy.” If you don’t advocate, you don’t get what you need and people who don’t have an advocate DON’T get what they need.”
  • Transportation is a problem. Even when we can arrange for the ACCESS bus, the driver is unable to leave the bus. My mother is in a retirement home and needs someone to cue her to be outside and ready for the bus for Adult Day. It’s a great service that is right on time and easy to navigate, but I think there is a big need for volunteers to help people get to and from the bus and back to their rooms or homes.”

Many Positive Experiences and Words of Thanks: There were several examples of people who were very happy and grateful for the “wonderful” and “excellent” care they received in Long Term Care, through physicians, home care, adult day, CCAC, The Alzheimer Society, Veterans Affairs and hospice.

  • “I am so thankful there is a place for people to go who need help to live out their later years. I can remember one very caring RPN consoling me when I lost my patience with my parent. I was so ashamed and emotionally shattered. I will never forget what she did for me.”

Stigma:  There were several stories of how stigma and fear of what people will think became barriers to people asking for and receiving the care they need – especially in issues involving adult mental health or substance use.

Hospital Discharges: There were several stories of hospitals wanting/needing to discharge patients before the care partners, adult children or spouses felt prepared to care for them. This was a great cause of stress for people- many of whom reported "Having a melt down" and "Weeping uncontrollably" in the hospital. The route to receive home care supports was often not clear or sufficient in their eyes. They also reported being told one thing by one professional and the opposite from another and feared home help would be offered but removed too soon.

Shortage of Affordable Retirement Homes and Supportive Housing: There were several people reported a lack of affordable retirement homes and supportive rental housing situations. They also expressed concerns about some older retirement homes needing to close down in their area because they could not afford the retro-fits to keep them up to “code”.

 

 

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