Summaries Resource Exchange:
This Lived Experience Resource Exchange for December 2017 – January 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 36 people from across all of South Eastern Ontario. 30 people were spouses, adult children, family or friends and 6 people were older adults living with a dementia, mental health or other neurological disorders.
Advisory conversations in December 2017 – January 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.
December - January Resource Exchange – SE Ontario Lived Experience Network
December 2017 – January 2018 Face to Face Advisory Conversation Summaries:
Face to Face Advisory Meeting Findings
Supports That Helped:
- *Several families mentioned they had positive experiences with their involvement with the Memory Clinic at the time of the diagnoses, they liked that it was so collaborative and comprehensive. “We found our experiences with the Memory Clinic to be very positive. The whole meeting was well handled and the communication and information was clear. We felt very supported and were able to include our daughters in the conversation. Everyone was there and all working from the same page.”
- “The Memory Clinic helps you navigate your overall health.”
- “When it comes to information about the disease and where to find supports, I got more information from the Alzheimer Society workshop “In My Shoes” than anywhere else. It was so helpful!”
- *Several participants expressed positive experiences with their family doctors and nurse practitioners including good and open communication and referrals to psychogeriatric care/ memory clinics for assessments.
- “Support groups are key for us. We come as a couple and you learn so much and feel supported. We go to everything we can.”
- “I have found our pharmacist to be very helpful in taking time to look at everything I am taking (over the counter and prescription) to see if there are any issues.”
- “We have had a great experience since moving to our retirement community. Besides activities and bringing up our evening meal, they offer monthly blood pressure tests and much more, they’ll even start your car for you. It has been wonderful.”
- “We have felt very supported by our Nurse Practitioners. They are a very good resource and we have found them to take more time when meeting with us and more compassionate than when we are more rushed with our doctor.”
- *Participants expressed their appreciation for support for activities provided by their social and church groups.
- *Several families mentioned they did not feel the Health Care Connect program was an effective way to find a doctor. “After moving to this area and having to let go of our doctor, we have found the Health Care Connect is not how people really get a new doctor…it is still word of mouth, an emergency room doctor who takes you on or your friend of a friend.” … “Health Care Connect is simply not working. Asking people to let go of the doctor they have to sign up for the possibility of getting another doctor – maybe – is just not reasonable especially for people who are older and vulnerable.”
- “One concern I have with the management of our health care system is all complexities and hierarchies in management. It is too complicated and is not cost efficient.”
- “I believe ageism is a real problem in our society and in our health care system. When my mother was palliative, there was a real sense that she couldn’t die fast enough and that she was taking up that bed! I believe it was because of her age. Just because they are old they still deserve the same care and respect as everyone else…maybe even more.”
- “Clear and compassionate communication is a problem. My mom called to ask if she and my father should be put on a list for long term care. When the worker determined they weren’t ready to go yet, she didn’t even offer to book an appointment to talk about what their options were –like respite, home care services, adult day or to get a sense of how much help these people might actually need. I think older people have trouble communicating and understanding as it is. The message mom received was “Don’t call us back until you are ready for long term care.” Now I have to un-do that. She called once and failed and now doesn’t want to call again.”
- *Many people phoned, or spoke to me asking questions around how to talk to their doctors about getting assessed, what is psychogeriatric care and how do you access it and who do you call for home care, adult day or long term care? Navigation continues to be a challenge.
December, 2017 Live Chat Summary – SE Ontario Lived Experience Network
December 2017 SE Ontario Live Chat Topic:
Last month, one of our Lived Experience Members and I had the opportunity to participate as part of the BSO (Behavioural Supports Ontario) Provincial Coordinating Office Expert Panel for Non- Stigmatizing Language with a Dementia Focus.
December’s topic is an extension of these expert panel discussions, which really emphasized the issue of ageism in our society as a whole and how that affects the delivery of health care. Ageism is prejudice or discrimination on the basis of a person’s age – specifically against the elderly. It is also a tendency to regard older people as debilitated, unworthy of attention and unsuitable for employment.
Based on your lived experiences, come prepared to share:
- Some of your observations of ageism in our society?
- Any words or saying you feel encourage stigma about dementia or inappropriate beliefs about aging?
- Any experiences you have had or observed with ageism and stigma and how it affects the delivery of health care - particularly for someone living with cognitive impairment?
FEEDBACK FROM SE ONTARIO LIVED EXPERIENCE MEMBERS:
Observations of Ageism in Society:
- “This is such a huge topic. Are we seniors? Elders? The Elderly? Etc. and when do we start to fit into that category? And does the younger onset dementia get missed because they aren’t in “these categories?”
- “I actually think we live in a good place. I have not felt any stigma related to getting older and all our friends are kind and loving to my husband. Our doctors have been fantastic.”
- “What other age group gets group together that encompasses over thirty years difference (65 -99 years old) and calls it one homogeneous group?”
- “A few of my “mid-seventies” friends have asked me, “Did you ever notice how once you turn sixty five and retire you become invisible when it comes to customer service and people paying attention to you?”
- “I’ve experienced people addressing the younger person I am with instead of me.”
- “It seems to me that other cultures have maintained their respect for the elders but we are moving so fast that we don’t see value in patience and thoughtfulness.”
- “We really could learn some valuable lessons from some other cultures.”
- “I am wondering if it has something to do with basic respect for another human being….retired or not.”
- “I think there is actually quite a bit of respect for the older generation. When I was working I coloured my hair. When I retired I was surprised to see how grey my hair was, but then I noticed cashiers etc. calling me dear and being helpful. We who are aging should be grateful for any kindness shown.”
- “We are often walking the tight rope of keeping them safe and preserving their independence and respect.”
- “Last week I stopped an individual at the long term care from going outside with just his t-shirt. He did not have dementia. I felt bad all week because although I was trying to be helpful, I did not respect his individual right to make his own decision. He is free to go in and out and do as he pleases.”
- “I also struggle trying to find the right balance between doing too little or too much for my wife. I’ve decided if it is a safety issue or causes her anxiety; it is time for me to help out.”
Words and Sayings that Encourage Stigma and Inappropriate Beliefs about Aging:
- “Excuse me; I’m having a senior’s moment.”
- “It must be my old-timers kicking in.”
- “How about speaking loudly because you are older?”
- “How about when you are very active, fit good looking etc. people say you are that…for your age.”
- “The silver tsunami which implies age is a disaster waiting to hit.”
- “They are demented.” Demented is an awful word that needs to be banished!”
- “The word demented is similar to the word retarded…it is hands down the most offensive word. We should just say this person is living with dementia.”
- “I also notice terms like “suffering with dementia” are not the greatest – yes we all agree this is a terrible disease, but we also want to emphasize that people living with a dementia can still live their life well, with joy, purpose and meaning.”
- “Any words that are blaming or labelling should be avoided.”
- “Another example of stigmatizing language would be saying, “I am going to toilet your mother” or referring to residents who need more assistance as “the feeders.”
Experiences with Ageism and Stigma and how it affects the Delivery of Care:
- “From my experience with my Mom and some of her appointments, professional people should be attuned to the needs of the elderly. However, that is not what I have witnessed and have often felt disappointed. In general people need to be more patient and look directly towards the senior person to have that eye contact, expression etc. Otherwise the information is lost because they didn’t “hear” them.”
- “My own mother was told by her family physician a few years ago that she had a hiatus hernia but that because of her age she likely wouldn’t qualify for surgery and she had just turned 70! She suffered with symptoms and finally seven years late another doctor referred her to a surgeon who could not believe she suffered as long as she did.”
- “It is overwhelming that all questions are addressed to me when my husband is right there…these questions should be asked in a general way to include us both when my husband is right there.”
- “Over the years (working with seniors and families) clients and families have taught me a great deal about allowing for some risk. I just want to jump in and fix the situation; mitigate the risk; and live happily ever after. But is that what my family member wants and it is acceptable (for clients as well)? There is no magic rule, but we need to step in and help when there are safety risks or anxiety…but not step in too much.”
- “If we see people as “people” and not “old people”, we will do our best to keep them independent and vibrant as long as we can.”
- “Language is a priority for our Community Seniors Mental Health teams. We are trying to banish the words aggressive, violent, abusive etc. and speak more in terms of responsive behaviours. Our clients, residents and patients are only acting on what their brain is telling them to be the true and they are responding to the stimulus whether it is a person who is assisting with their morning care or a co-resident who walks into their personal space. The responsive behaviour is not intentional, rather it is self-protective.”
- “I am not sure where this belongs, but professionally we call it “Diagnostic Overshadowing” meaning that because the person has a diagnosis of AD or another dementia, sometimes it is that diagnoses that gets attributed to the reason for a change in behaviour when in fact it could be an underlying medical condition. We often hear, “It’s their Alzheimer Disease.” (Several chat participants had experienced this – symptoms were disregarded especially when experiencing a delirium or pain.)
- “I think one of the ways ageism affects the delivery of care for older adults is how short the education programs are for PSW’s staff supporting seniors compared to similar professions like SSW, ECE and CYW who train for at least two years. This is an extremely complex population with multiple health issues and social needs taking place at the same time and yet the training required to support them is shorter than any other profession like it. That to me implies we see older adults have less important.”
December Province Wide Live Chat Summary:
Behavioural Supports Ontario Provincial Lived Experience Network Advisory
The purpose of the Behavioural Supports Ontario (BSO) Provincial Lived Experience Advisory is to join voices from across the province to establish a provincial advisory network of individuals with lived experience. The Advisory also guides BSO projects and participates in an accessible virtual platform to connect people through shared experiences. Lived experience, in the context of BSO, refers to the experience of living with dementia, mental illness, substance use and/or neurological disorders or the experience of being a care partner with an individual living with one or more of these conditions. Examples of care partners may include family members, friends, etc., who play or played an active role in supporting an individual living with one or more of the above conditions emotionally and/or physically.
The BSO Provincial Lived Experience Advisory is co-chaired by Sharon Osvald, Lived Experience Facilitator for the BSO Provincial Coordinating Office and Rhonda Feldman, Mental Health Clinician with the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer's Support and Training.
Originally, we had another topic chosen for the December 20, 2017 live (typed) chat discussion question, but due to the various commitments and activities surrounding the holidays only five people were able to participate in the live chat. Instead of our planned theme, we held an “open” topic chat. The following communities were represented: Sudbury, Brighton, Chatham and Trenton. Emails were received from two participants sharing their input from Kingston and Cloyne.
As a result of the discussions, key themes emerged:
“Emotional Fatigue” associated with the grief, guilt, sadness and loss that come to the surface as a result of the holiday season.
- One of our family care partners and Advisory members emailed that they would not be attending the chat and stated they were feeling “Emotionally Fatigued” as the Christmas holidays were approaching. Many of our participants expressed feeling the same way.
- “Holidays can be a challenging time as there are so many memories and triggers associated with Christmas. This can also initiate certain behaviours.”
- “I find holidays trigger my guilt and grief. It is one thing for me to enter into Mom’s world on a day to day basis, but holidays like Christmas, birthdays etc. remind me of the past and of the loss.”
- “I am seeing in the eyes of the families I support the tiredness and also the grief and guilt. I try to reassure them but I still see them almost in tears wondering if this is their last Christmas at home and the guilt of having to make that decision to go to Long Term Care.”
- “I can completely understand emotional fatigue! I have worked in this field for almost 20 years, but there is nothing like lived experience. The emotional drain is unbelievable.”
- “We are supporting family at a time that is more difficult for them and we have our own emotions to work with and get through. Sometimes it can get to be too much.”
The need to adjust expectations, schedules during the holidays and the importance of simplicity.
- “I am still learning to adjust my expectations. In fact expecting nothing at all works well too.”
- “The person living with dementia picks up on everyone else’s moods, anxieties and worries. They also see a lot of coming and going. It can get to be a bit too much for them. It is difficult to remember to leave our agenda behind and meet them where they are today.”
- “There is a lot of social pressure to have a picture perfect holiday. You see other families on social media having their picture perfect holiday or on the TV etc. (of course we know what we see is only partial truth) but it does add to our disappointment and sense of sadness.”
- “I was recently reading an article about managing the expectations of those who haven’t seen their loved one in quite some time and the importance of advising them on what to expect before they see them – especially if there have been significant changes.” https://www.alz.org/care/alzheimers-dementia-holidays.asp#familiarize
- “The challenge with Christmas and other joyous occasions is the distraction of lots going on and lots of coming and going. It is hard on the person living with dementia because they do not feel included. Unless there is someone who knows the person and understands the disease sitting with them ensuring inclusion – that is a tough job!”
- “Family members can take “shifts” support the person living with dementia. It often gets noisy with everyone talking over their heads.”
- “There is the pressure of not knowing what they might do, or how they might respond. The first year we hosted Christmas my mother wanted to go back to the LTC (home) in the middle of the meal. It was juggling the pressure of hostess, mother and daughter/care partner all at once. It made for a stressful dinner for sure.”
- “Keeping it simple is something people need to learn and give themselves permission to do even if it means altering beloved traditions…Pizza and Sushi are totally acceptable Christmas traditions to start. Who says you have to have turkey or ham?”
- “There is so much pressure to have the ham, turkey, potatoes, stuffing, etc. I think it needs to be “ok” to have an easy meal, potluck or catered food.”
- “Providing a quiet environment at any family gathering is a challenge…it might mean we break up the tradition.”
The importance of communicating your needs (and how the needs of the person living with dementia have changed) with family and friends who provide you support.
- “Great communication with key family members to ensure there is someone for backup is important in the event that something goes sideways while we are indisposed.”
- Participants mentioned feelings of resentment (mixed with guilt for feeling resentful) and expressed the wish that they had more help from family members…. “It is what it is, but sometimes I do wish a sibling would give me permission to not be the responsible one by making their Christmas routine include our mother.”
- “We need to make ourselves ask for help too. Sometimes we assume our family members can see how stressed and burdened down we are feeling – but often unless we tell them and tell the HOW to help, they don’t know what to do and assume we’ve got it all under control.”
January SE Ontario Live Chat Summary:
Tuesday, January 9, 2018 TOPIC:
SE Ontario Topic: Our January 9th SE Ontario Live Chat will be an open theme. Come prepared to share some the challenges you have been facing in your role as a care partner and also some of the ways you feel supported and even grateful.
1. Early Onset Dementia – This was the experience of several of our participants:
- “My husband was diagnosed at 61. It had been a long and winding road!”
- “My husband was early onset also. The rocky beginning made for the added burden.”
- “Early onset must be very life altering.”
- “Fortunately I had no retirement plans per se and definitely no time to develop any. It is most sad for my dear husband.”
- “My husband has been in LTC for six months now, and it is more difficult than I ever could have imagined! He was diagnosed with FTD 10 years ago at age 63.”
2. The Effects of the Lack of Time Spent “outside” (and off site) once a person living with dementia enters a hospital or Long Term Care:
- “The other day as I was walking down the corridor, looking out towards the Lake, with the snow coming down, I suggested we escape and a big rare smile spread across my husband’s face! So now I know, he does feel imprisoned.”
- “I feel bad about how little my mom gets outside too ...winter makes it impossible for her to ever leave. I think about that a lot.”
- “I am an outdoor person and I have told my children for the future that they are to hire me a person to take me outside at least once a day, winter- spring- summer- fall. Even if I just sit in the car.”
- “It is important for people to get outside, even if it is just to sit in the car.”
- “I asked my Dad if he knew what my new car was called and he replied, “Getaway car.”
- “The outings are so important to people in care. It is nice when homes have wheelchair buses or are able to rent them for country drives. We go to the beach in the summer two times and take Kentucky fried chicken for everyone. In the retirement home we used to go to the sugar bush and on a wheel chair hayride. That was the best ever
3. Holiday/Caregiver Stress and Solutions:
- “Families I work with do tell me often that holidays are stressful. There is the pressure to make things the same as the past and really it is just not the same right.”
- “We kept it really simple and just brought mom home for a quiet afternoon in front of the fireplace and Christmas tree. Then a small group of our family had a tea party for her on Christmas day.”
- “Our family has learned to keep things simpler, adjust our expectations and make visits shorter and with less people."
4. The Benefits of the Social Stimuli and Examples of Activation Provided in Long Term Care and Adult Day:
- “For my mother there were years of struggle through depression, selling our family home, loss of driving privileges and accepting care but she has thrived in LTC even rebound 80% after stroke in July.”
- “It is good for us to remember that Long Term Care often provides an element of care and stimulation – that we cannot duplicate at home. It is needed and helpful.”
- “In Mom’s case, she struggled in her apartment and it wasn’t until after the move and adjustment that we saw how she thrived around others –with the stimulation from the ladies at her table in the dining room to the music and activities.”
- “In activation we also have faced the challenge of male focused activities. In our day program recently we have a volunteer that brings the wood shop in. It is fabulous and the ladies enjoyed it too. We were sawing and drilling. I think LTC homes in this country need to have more workshops in their buildings.”
- “A workshop or interactive kitchen would be ideal, but my wish is a simple one –a clothes line!! My mom and I always enjoyed hanging clothes on the line – something about it is comforting. I always thought this would be a good outdoor activity.”
- “There’s a neat idea called the men’s shed, full of tools and things for men who don’t have access to a workshop anymore. My dream was to make a version of this in LTC. There is a retirement home in our area that has a good start on one.”
- “One place I know is working on getting a car to place in their outside courtyard for people to putter on. I love this idea.”
- “I had a resident who enjoyed pet therapy ask if they could bring a cow, horse or pig by in the summer. He was a retired farmer. I have heard of petting zoos in LTC.”
- “We’ve had residents travel to a horse farm but not one come to us.”
- “Petting zoos would be great for our family fun day. Last year we had antique cars.”
- “My co-worker in adult day and her activation staff hatched chicks last year and named them all. One of our staff brought in ducklings last year and everyone got to hold one. It was awesome.”
- “We have a volunteer who comes into our home and plays the harp for people in their rooms. I love that!”
- “Budgies are a hit at many homes – they are easy to care for and some even talk. Our budgie lives in a huge bird condo in the activity room and everyone talks to him.”
- “It is very difficult to avoid feeling guilty even when you know the reality is we are doing the best that we can.”
- “It is interesting that you bring up the constant guilt. One of my aunts passed away just after Christmas and my uncle has dementia. My cousins struggled with the decision of whether or not to bring him to her funeral. In the end they didn’t, but felt so guilty. When I reassured them that they made the right decision, my cousin let out a huge sigh of relief. They didn’t have anyone to talk to about this, which made the whole situation that much worse for them.”
- “I guess we need a whole chat about guilt! We all do the best we can and it is really about this ugly disease process that we have not control over. We certainly had profound sadness and wish it was different, but we can’t burden ourselves with guilt.”
6.The Benefits and Interest in promoting Inter-generational Interaction and Volunteers
- “I am on the Family Council and we have a plan for an inter-generational program with Grade 4-5 students buddying up with residents one afternoon once a month.”
- “If you want to do this, just get in touch with a local school, especially if you know any teachers or principals.”
- “We’ve talked about the importance of having more intergenerational interactions for seniors in Long Term Care/ Retirement Homes quite a few times in this group.”
- “Someone needs to make a connection with a school board or even start with a teacher if you know one. The challenge is the cost for bus. The children’s parents need to sign a waiver…You could also avoid bus costs if the kids can walk, but this only works if a school is nearby.”
- “We have a Grade 8 teacher send kids over to play cards/checkers once a week with a volunteer.”
- “I worked in the Retirement Home that had volunteer supervising kids who would come and read to the seniors….plus youth need volunteer hours to graduate from high school so it is a win-win.”
7. The Need for Education in Non-Pharmacological Approaches and Increased Staffing:
- “I work in a LTC home and I am very interested to see that my non-pharmacological approaches work. I think there needs to be more funding to have caregivers trained in these approaches- rather than just giving chemicals.”
- “The MOHLTC needs to increase funding for activation and recreation – when you no longer are working it is what may fill your day – this would address non pharmacological approaches to needs.”
- “Consistency is so important (in home care and LTC) you don’t take your children to different care providers, so why would residents have to deal with having so many different care providers.”
- “The increase of funding in activation would definitely help reduce responsive behaviours.”
- “More day programs and overnight respite is needed too. You would not believe the amount of time that people are just doing nothing. I would lose my marbles as I love being busy.”
- “There are many great educational opportunities for health care providers like GPA, Montessori Dementiability and PIECES, but lately I’ve been able to take Teepa Snow’s Positive Approach to Care training – and it is a wonderful hands-on skills training that can also be provided to family care partners (not just professional caregivers.)”
- “I love Teepa Snow’s PAC training. I wish I had it years ago – especially using the Hand under Hand approach. This is especially helpful when helping feed someone their meal. It is not nice to have someone jamming a fork into someone’s face…I am so happy this training is available for families.”
- “There seems to be a push to get people off the medications they are on, which is great, but if we don’t educate staff and families to provide the right kind of activities and how to approach them in a way that will bring positive outcomes it won’t really matter will it?”
- “Like Teepa Snow says, substitution, not subtraction.”