This Lived Experience Resource Exchange for February and March 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 forty-one people from across all of South Eastern Ontario. Thirty-six people were spouses, adult children, family or friends and five people were older adults living with a dementia, mental health or other neurological disorders.
Advisory conversations in February and March 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.
February and March 2017 SE Ontario Live Chat Summaries:
TOPIC: Both February and March’s SE Ontario Lived Experience Café topic comes from Providence Care Seniors Mental Health and focuses on how to help older adults living with dementia, mental health or substance use or other neurological disorders to be able experience as much independence and choices as possible.
One of the challenges that emerge for families and care partners when supporting someone is finding the balance between helping their spouse/parent/friend in a way that minimizes risk and frustration to that person and others and provides good quality care, while at the same time honouring the person’s need to still experience as much independence as they are capable of enjoying. Finding this balance can be so fluid and challenging.
1. How do care partners achieve this, what works?
2. What help/s would aid care partners in making these decisions together with the person?
3. What tips can you share from your lived experience for those who are struggling?
Aging in Place Technologies Can Help People Live More Independently:
- “Toronto area researchers across Canada are focusing on Aging-In-Place technology. I presented in December at the “Finding Your Way Forum: related to those at risk of walking and getting lost/wandering. I live 30 minutes from my parents and we actually have a robot litter machine for my dad’s cat and a Roomba vacuum cleaner too.”
- “For me, it’s not purely the technology…what’s more important is if the technology gets the job done to assist with caring and supporting the person living with dementia.”
- “I have family in California remotely checking in on my dad to provide us respite and also a nurse friend who spends time with Dad online once in a while and she lives in Sudbury.”
- “Technology tools are for everyone. There is a fear is some of the use of the tools ex. I use video camera monitoring, GPS devices and video communication to pop up and chat with my Dad and Mom right away.”
- “My mom can check on her phone and check on Dad when she is walking in the neighbourhood stores, she texts family, takes videos and photos of the cat all the time and plays her memory games…but a lot of people fight with technology.”
- “Some technology is not yet set up in a way that is simple and user friendly enough for the older generation.”
Tips for Care partner/ Family to Minimize Risk and Frustration:
- “Caregivers need to take care of themselves and learn to spread the stress. So many caregivers try to do it all by themselves.”
- “Apologize a lot! It Gives control back to the person feeling out of control. E.g. your person won't cooperate to go to see the Dr! Try Just saying "I am so sorry mom; I must have forgot to tell you about the Dr appt today,” instead of trying to convince them.”
- “Use a third party to diffuse things. My role as a daughter could be ignored by mom, but conversations with private care staff had different outcomes.”
- “Never speak to others in front of them without including them.”
- “Ask if they want you present or not.”
- “Tell them you will advocate for them and then reassure them that you are capable of and willing to handle things to straighten out a situation.”
- “Remind LTC staff to get your person's opinion. When LTC staff asked me a question, I would ask them what did my mom say when they asked her?"
- “Always have a plan in place. For example on an outing, Dad chooses no coat, take one along.”
- “Reach out to people who are not family for support…I feel like my family is fading more and more away. They can’t handle seeing our (her) like that and feel guilty around me, so they avoid me. It can get lonely if you don’t reach out to others for support.
Offering Choices to Foster Independence and Respect:
- “Keep everything simple and be supportive. Dad responds to the techniques you use with three year olds…which socks do you want to wear- red or blue?”
- “Simplicity in life and communication works well in the dementia community.”
- “I always provide my father with choices and keep it simple.”
- “Everything…I always ask permission even for things like, can I help you take your coat off? Are your ready to go for a walk? Would it be ok if ...etc. When I forget to do that, I apologize.”
- “I spoke with a couple whose daughter had moved in with them. One of them had early stages dementia and the other some physical issues. They were feeling totally run over by the daughter who they recognized was trying to help, but they felt like all their choices and independence were gone.”
- “When they are in a facility, they have people all the time telling them what to do, I try and give them some of their choice and independence back.”
- “It’s easy to see why and how it happens…because we are rushed and have to get things done. Honestly, sometimes it is just easier to do it ourselves.”
- “Ask the person FIRST. Quit making decisions for them. Make it your rule to be respectful and always ask the person first. Even when I knew they couldn’t totally make a decision, I still had a conversation with them about it from trivial things like what to wear to the bank…showing respect without stress.”
- “As Mom loses her speech, I appreciate that I can recognize her facial expressions and body movements.”
- “It is difficult to use some verbal approaches when the person has lost a lot of the ability to be verbal and when there is a delay in getting response. It is hard to be patient. I usually say what I thought my husband was trying to say and then ask him if that is correct. It works pretty well.”
- “Whenever possible, the home should make exceptions to the rules if they better suit the needs of the resident…especially if what they have to do is causing responsive behaviours. Knowing the person’s personal history, likes and dislikes and as much as possible accommodating them.”
Re-evaluating and Anticipating Their Changing Needs:
- “I am learning I have to anticipate my mom’s changing needs. We just bought mom a wheel chair that is fitted for her but the design is more suited to laying back that sitting upright. She is going to need it, but it is not meeting her needs right now when she is still able to have more mobility.”
- “We need to anticipate their changing needs and respond to them, that maybe are changing, each day is different.”
- “I’m amazed to find my Dad is happy to colour…this is new…why should I have been surprised…his whole life he was doing figuring with numbers on a piece of paper with a pencil. He’s using that skill but in a different context.”
February Provincial Live Chat Summaries:
Our February 2017 Provincial Live (typed) Chat event on www.dementiacrossroads.ca included twelve 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, Thessalon, Kingston, Toronto, Brighton, Cloyne, Perth and Mississauga, Ontario.
Our topic came out of many discussions that have happened within the Provincial Lived Experience Network Advisory about families/ care partners need for practical education and training. What education and training do you feel is most helpful for family care partners and or people living with dementia, mental illness substance use and/or a neurological disorder?
- What education or training is available in your region?
- What types of education or training would have been or would be helpful if available?
Overview of the Disease Training:
- “It would have been nice to have access to “The Experts” on occasions rather than when in a rush during a de-brief in their office after an appointment. An overview of the disease, causes and what to expect etc.”
Strategies to Cope and How to Provide Care:
- “Strategies for providing care at different stages of the disease would have been very helpful.”
- “I need strategies for dealing with every day things like personal care, incontinence and shaving.”
- “I think it would have helped the family at home if they knew how to have an inexpensive method to know their wandering loved one has left the house. Caregivers don’t sleep because they’re afraid the person will leave.”
- “I would have liked education on Emergency Room Preparedness”
- “Another education topic that new caregivers and experience as well struggle with is trying to be a super hero and doing it all themselves. Training to learn strategies on how to spread the stress and get other supports needs to be taught earlier.”
- “Topics about inappropriate voiding, incontinence, learning about disrobing solutions and strategies/advice when initiating product use would be helpful.
- Participants discussed strategies to cope with inappropriate voiding in public.“Access to a continence nurse specialist would be helpful. They help many clients who have brain injuries and their caregivers to cope.”
- “I stress about taking my father to appointments because of incontinence. I lose sleep over it!”
- “Managing stress is so important and a challenge. The other part is the grieving that goes on with the ongoing and deepening dementia.”
- “Music, Music, Music. This is very a very helpful tool for both the person and the caregiver.”
Practical Hands on Education on Methods of Approach and Communication:
- “Any education is helpful. We need GPA – especially for families. PIECES training is geared more to professionals. If there was a “Cliff Notes” version of PIECES for family/ care partners that would be great.”
- “Early on, the ability to learn about communication challenges not just verbally, but body language as well would is needed.”
- “Training needs change as dementia progresses. I am now in the position where if I take my mom out, I am the one that needs to do the toileting, clean up after mishaps, safe transfer from vehicle to the side walk and then into the wheelchair.”
- “I do feel there needs to be sort of a step-approach to training and info, it gets so overwhelming sorting out what you really need to know now as opposed to down the road.”
- “There really should be an entire day of training just for communication. Even more difficult if a person has Aphasia.”
- “Communicating with my husband is my biggest challenge now along with communication delays.”
- “You really won’t find this as a training tool, but I’m a big fan of improvisation (“improv”) classes to teach the basics of communication with someone with dementia. Improv (role playing) is learning the skills to accept the other side and where the other person is at. I believe every caregiver should take a couple courses in basic improv.”
- “Things like Positive Approach to Care (Teepa Snow) training and the Validation approach are other successful training methods that allow people the opportunity to act out and role play while learning.”
- “Behavioural training is really hard to come by here. At present, if a resident in LTC needs a plan for behavioural modification they are sent to North Bay for assessment and have a care plan developed. Extremely limited for clients still at home.”
- “Training in communication is so needed when your spouse or parent is in LTC. You might know how to communicate with them, but now you are in a room of other residents, many living with dementia. How do you balance the conversation and not upset anyone in the room?”
- “It would be so wonderful if caregivers did not have to desperately seek out solutions late at night on the computer but could “feel” supported by having these trainings available.”
A User- Friendly Centralized Online Information Space and Avoiding Duplication of Services and Strategies:
- “Every time I ask my kids how to do something they ask if I looked up the answer on You Tube. It is probably a generational thing, but maybe some of these excellent resources could be put into You Tube in some sort of organized manner. That way you could access the information when you need it (just in time training).
- “I must admit that I am so overloaded with information at times that I only focus on my immediate needs not what I may need next month or next year.”
- “There is so much information online. Sometimes it’s hard to sort through everything.”
- “There is almost TOO MUCH information. I become overwhelmed and over stimulated by the Internet. I can’t even remember what I was searching for.”
“I see the value of a national centralized website with links to training/resources and discussion boards for various topics/stakeholders/individuals.”
- “There also seems to be a lot of duplication of effort by various groups. An example is each province developing their own strategy for dealing with dementia while the Federal government does the same thing?”
- Maybe some of that “duplication effort” could be redirected to develop a centralized repository of training materials.”
ANSWERS TO: What education or training is available in your region?
- “My Alzheimer Society support group fleshed out the introductory session on clinical aspects of the disease.”
- “I found at first the support group for the adult day program to be very helpful. They brought in speakers. More recently, The Shifting Focus document developed by the Alzheimer Society has been very helpful.”
- “The Alzheimer Society here is beginning to do some practical training for people who have their loved ones living at home.”
- “It’s not training in our region, but an interesting initiative that is helping residents and their family/care partners: Our LTC home has created a relaxation room. It is inspiring to see how it works. The lights and glow balls are mesmerizing.”
- “On the topic of glow balls, we have heard some really great success stories about Snoezelen Rooms in Long Term Care Homes.”
- “These rooms have been around for a while as therapy for Autism.”
- “We don’t have a room but there is a cart to take to the residents and they can go to the unit quiet area - modify and adapt.”
- “Our local Alzheimer Society has a well-stocked library or resources available on loan. I also found the www.Alz.org site particularly good. It has lots of information, easy to navigate and has discussion forums.”
- “brainXchange.ca has excellent resources and webinars. I have quite the library of collected from there.”
- “We have talked in our family council group about having a series of information sessions (1 hour for 4 weeks) to help new families understand LTC. Perhaps this might be a working model for dementia counselling.”
- “We have been pretty lucky in our area with a great Community Care organization. They occasionally do information sessions.”
- Sometimes you just need a little encouragement to think outside the box when looking for solutions. I always find that easier in a group setting (support group).”
- “The Ontario Association of Residents Council has webinars for residents.”
ANSWERS TO: What types of education or training would have been or would be helpful if available?
- “Strategies for dealing with the symptoms of dementia.”
- “Grieving and the ongoing having to be ‘up’.”
- “The hardest part was knowing where the journey was going. My mom just lost so much.”
- “What to expect when moving into Long Term Care. I wish I had known that I could go on admittance day and singed the forms and provided documents then and my mother could have arrived a day or two later. As it was she had nothing of her own and sat there in an uncomfortable chair – wondering what was happening.”
- “I would like to have had more information on what “pain” looks like or how dementia presents itself for pain.”
- “I understand there are pain management tool kits… Myself I cannot manage a rainy day without a microwaveable bean bag but in LTC people need a physician and physio order for someone to apply a warm bean bag.” “Pain management education would be helpful for sure.”
- “It would be great if there was a resource person to contact with questions arising from articles read on reputable internet websites, especially in regard to new thinking on disease progression.”
February- March 2017 Face to Face Advisory Conversation Summaries:
Barriers Exist to Accessing Care for those Living with Dementia and Also Mental Health and Addiction:
- “Older adults living with dementia, mental health and addictions (along with their families and care partners still feel that they are “lost in the system” and receiving “mixed messages.” “I used to work for CCAC and even still it was hell on wheels trying to get help. It is sad that you have to fight so hard for what you need.”
- “There is huge variability in what services exist and how they are accessed, even within the same region.”
- Privacy legislation limits friends and family’s ability to be involved in the care of their loved ones. Some health care providers will still provide the opportunity for them to share by listening to their feedback without breaching the privacy of the person; others will not listen at all.
- There are several issues with the mental health act.
- Health care providers not “seeing or acting upon” symptoms of dementia, rather dismissing it, “Oh he’s just getting older, oh he is just dehydrated.” (Fortunately, there were also examples where primary care providers and specialists were quick to act and very collaborative and proactive in their approach.)
- In cases of persons living with early onset dementia, there are many age restrictions that keep them from qualifying for services and supports. It was also noted that “it is very difficult for these people to work, but they are young, physically healthy and need opportunities to keep them busy, active and purposeful. There is a real shortage of opportunities for them to volunteer in a supportive environment.”
- “Communication is always and likely will always be a huge gap. Everyone in that health care circle needs to be talking clearly with the person and their family and with each other.”
- There are significant lack of social activities and support groups for those who are younger and living with dementia. “The younger folks are so isolated and need socialization, healthy lifestyle activities and exercise, especially after friends fall away.”
- “It is so hard for me to advocate for my husband. I am not an aggressive person and I feel like when I approach staff they see me as a problem. I also don’t want there to be retaliation against my husband. It might sound silly – but it is a real concern for me.”
- “Respite is a huge barrier. I can get respite if something is wrong with him, but not when I am sick, when I had knee surgery or I am unable to take care of him. What is with that? I feel like a prisoner in my home with a Velcro person attached to me.”
- “I broke my hand and had to wear a cast for four weeks. I couldn’t help my husband dress completely. He had to wear compression socks and I couldn’t get them on him and there was no respite or home care for me. If he had broken his hand we would have got help. It just doesn’t make any sense. Keeping them home means caring for the caregiver too.”
Supports that Help:
- “There were some real gems in our health care story too, people who really cared and even phoned me at home to see if I was doing ok even after he was admitted to long term care. That made a huge difference.”
- “The Alzheimer Society is something I wouldn’t want to be without. They were with me through the whole thing like an anchor and even now while he is gone, they haven’t “closed my file” they are still here walking me through my grief and helping me to give back to others who are just beginning.”
- “Adult Day has been our saviour. He is happy and they love him!”
- “Our family health team is helping. There is better communication a social worker and they are supportive and share where to find information and services.”
- “Our long term care home goes above and beyond. I couldn’t be happier. The staff knows your name; they care about you and the residents and really get them involved. The home was not my first choice because it is quite a drive for me, but I am not going to ask to have her moved because I see what great care she gets there and that she is happy.”
Promoting Dignity and Independence Ahead of Safety Whenever Possible:
- “You always hear “safety first” but I don’t agree. It should be safety first when it HAS to be, but dignity, independence and allowing the person to live as much like “themselves” should come first. Health and safety should come after that or we will just start “processing” people to get them through the day.”
- More discussions surfaced around the manner and process in which people lost their driver’s license. “Whether this is done with kindness is very important. When it is not, it sets the family up for future conflict.”
- “One of my biggest frustrations is that it is not a greater priority to keep people from becoming incontinent. Seniors having to wait to use the washroom for 15 minutes or more and the response being …it’s ok because they have a diaper on anyways. It is not ok! Losing the ability to go to the washroom on your own is a major blow to dignity and independence.” The conversation also included discussion around the choice to put long term care home residents in hip protectors. Often residents are unable to remove themselves and now require assistance, even though they would otherwise be perfectly capable of toileting themselves independently. Which is more important here their safety (breaking a hip from falling) or prolonging their dignity and self-sufficiency as long as possible?