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The Lived Experience Cafe chat

June-July 2017 Resource Exchange Findings

June and July 2017 Summaries Resource Exchange - SE Ontario Lived Experience Network:

Who? 

This Lived Experience Resource Exchange for June and July 2017 is a summary of face to face conversations, one SE Ontario live (typed) chat conversation and one provincial live (typed) chat event. These conversations involved input from forty-one people from across all of South Eastern Ontario. All forty-one people were spouses, adult children, family or friends of older adults living with a dementia, mental health or other neurological disorders. 

How?

Advisory conversations in June and July 2017 happened through phone calls, face to face meetings, one Province-wide Lived Experience Café themed live chat and one 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.

June - July 2017 Face to Face Advisory Conversation Summaries:

Barriers to Receiving Quality Care

  •  “A lack of consistent and accurate communication while in Emergency Department or in Hospital resulting in family/care partners being told conflicting information about care options, departure dates, supports that they are eligible for and who they should be reaching out to. Families report feeling they were “on a roller coaster”, “didn’t know who to trust”, “out of control and on the verge of breakdown”. “Plans and instructions were changing even within the same hour from people in the same department. My husband was already very ill; this just added a constant layer of anxiety when we were already wracked with grief and worry.”
  • We had an issue with communication when we were being discharged from the hospital. We were supposed to be signed up to receive extra care and support when my husband returned home, but it had not been done on the computer so nothing was prepared for us. We got lost in the process and didn’t have the extra support we needed. This caused a huge gap for us.”
  • “Long waiting lists for services are an issue. We were told it could take three months or six years for my husband to get a bed in LTC.”
  • “I understand the reasoning behind it, but I think it is wrong that people are told “their file is closed” or “they are discharged” when receiving care and they live in the community. That leaves it up to us to chase them down again when things decline. It just leaves you feeling in limbo, no dates to check up on you again, starting from scratch all over again. Can you imagine if you had to do this every time you went to the doctor?”
  • “What is going on with CCAC? Do we call the same number? Is it the same person? Are they offering the same services? I haven’t been told anything. I believe once you are their “client” you should stay their client.”
  • “One real issue is a lack of training and understanding of dementia in retirement homes. More and more people are finding themselves in retirement homes for respite or because they can’t get into LTC. My mom suffered second degree burns because people didn’t understand her needs and her disease when they were helping her to feed herself.”
  • “I hate it when they have an assessment and it just happens to be on a “good day”. It is difficult to really communicate and display how a person with dementia lives on a day to day basis when they are being assessed for services and supports.”
  • “An issue we dealt with was that pharmacists seem to be encouraged to change their drug prescriptions to generic drugs for cost savings. They claim they are the same, but my husband had a terrible reaction after being switched to a generic drug. As soon as we switched back he returned to normal.”
  • “One barrier we face is the rules that exist for giving medication that our home care provider has. Some staff are not allowed to administer prescription drugs, others are not allowed to apply an over the counter topical cream he needs. All of these factors make it really hard for me to leave him.”
  • “In our situation, I wish the home care visits were longer and less often. That would work better for us.”
  • “Consistency and Access in home care can be an issue. My wife needs the same person (or as few people as possible) every time. We need consistent times- right now we are working around their schedule which varies - not them working around our needs Finally, there are many times we need respite or care that staff are not available like weekends or evenings. Week day help is appreciated, but it is not enough when you are doing this over the long term.”

Supports that Help:

  •  “When my husband was being diagnosed, our doctor was amazing. He was so supportive, gave us the information we needed and helped link us up with the care and supports we would need in the future. Although, it was a terrible time, we were able to have a good experience. I still feel very informed and supported.”
  • “It doesn’t take any more time or cost anything – but a little compassion and knowledge goes such a long way. These people make all the difference.”
  • “It would be so helpful if there were social workers for family members attached to Long Term Care Homes or Adult Day Programs. There is so much loss and stress to absorb and no time to absorb it.
  • “I was very grateful for the help we had to make our home safer. People came and did a safety assessment on our house and that has helped some with my husband falling.”
  • “If it wasn’t for the day program and overnight respite, I would have crashed a long time ago. The day-away program my husband attends does a great job. They interact one on one, so I can relax knowing he gets attention, care and that they are doing things with him.”

 

June SE Ontario Live Chat Summaries:

June 2017 Live Chat Topic: This topic focused around self-care and what things help family/care partners and “keeps them going”.

Supporting someone living with dementia or a similar diagnoses, can be a joyful and fulfilling experience, but it also can be long and difficult. A common question that is asked of families/ care partners is “How do you do it?” and “What keeps you going?” Maia (also known as Bluebird on the lived experience café) was the first member to share her insights with the SE Ontario Lived Experience Network. Since that time, Maia’s experiences have included her husband transitioning from their home, to being cared for in different long term care settings before passing away a little over a year ago.  Maia (Bluebird) will be joining us and sharing some of her insights on what helped her to cope and to continue growing and thriving as a person throughout her and her husband’s dementia journey and beyond.

  1. Come prepared to learn – and share – what keeps you going in your journey? It is my hope this chat will be encouraging to the participants and will also inform the health care system as we identify things that help families/ care partners to cope and live well.

Key Findings:

Becoming an advocate and involvement in helping others and helping improve health care for older adults has been helpful:

  • “This forum (The Lived Experience Network) was a bright spot in my journey. It gave me a place to offer help, share my story and advocate for change. That was a step in making sense of this journey.”
  • “I promised myself at the beginning that I would not be a victim to this. And part of that for me was deciding to be a part of improving the system and environment. That’s been very empowering.”
  • “For me being part of this group has been key and knowing there are others out there going through exactly what I am going through.”

 

Taking Care of Their Physical, Intellectual, Emotional, Spiritual and Social Needs

  • “It was important for me to know this was NOT a dead-end street, and it was NOT going to claim a secondary victim – (me).”
  • “The only way I know is to continually review, what’s working, what isn’t, how am I doing today, what do I need to do to look after myself? Whenever I start to feel defeated, I review and change what I do.”
  • “Too many caregivers pass before the actual person living with dementia does.”
  • “A former pastor friend of mind told me he buried more caregivers than people they were caring for. He regularly checked up on me and was one of those who encouraged me to have my own life.”
  • “As a daughter, I have to remember not to let this claim a third victim: my husband, my children and my marriage.”
  • “It’s important to keep connections to all sides of ourselves: physical, intellectual, emotional and spiritual.”

 

Self-Care: Support from support groups, friends and family

  • “Support groups have a very special place, but it must go beyond that. There has to be a circle of support of people that are close to you and helping you.”
  • “I appreciate the support group. It is an avenue where I can vent and not burden my kids with my problems. I can learn from others about their journey and how they have coped and what resources are available to us.”
  • “I send a weekly newsletter to my family members to keep them up to speed and it helps make them feel more connected.”
  • “Having friends and a support system in place to listen and care for us and help us strategize is needed.”
  • “I find that family members either can’t cope or don’t know what to do, it’s not necessarily that they don’t care, but still it would be nice to have more support.”
  • “It is also important to maintain some contact with community that is not about the dementia to make us feel like we are still normal.”
  • “I truly believe that my faith and the support group saved my sanity.”

Self-Care: Physical Needs – sleep, exercise, eating healthy, rest and respite

  • “The caregiver day the Alzheimer Society puts together (focused on rest and providing respite) is a great stepping stone to self-care.”
  • “Being physical is helpful. Sometimes just going to the gym and just working out for an hour makes me feel better. I sometimes climb Mount Pelion and look down on the city. (Getting outside) I am alone up there and it is relaxing.”
  • “I find it is so important for me to get away from it all, even if it is around home. That rest is so necessary. I’ve been enjoying gardening, I love to paint and draw. Sometimes I just need to spend a couple of hours with friends. It is so easy to just give in and stick around home and work, work, work and expose myself constantly to the stress of caregiving.”
  • “Eat, sleep and look after your physical needs. Get a massage; make regular doctor and dentist appointments. This is so important.”
  • “And getting sleep may involve getting people to help. It was something I was hesitant to do. That would change if I could rewind the experience.”
  • “No one can think clearly or be objective and come up with strategies for caregiving…or just living when they are exhausted.”

Self-Care: Things that build emotional, intellectual and spiritual health:

  • “One really has to decide what your limitations are and learn to accept them. It is OK not to superwoman.”
  • “We have to change our thinking, not over think and try to think positive and grateful thoughts.
  • “Stand-up comedy is used in different support groups. I have seen some mental health shows too that have been inspirational and therapeutic.”
  • “Being able to laugh at yourself, your situation, at some of the ridiculesness of the disease is very healthy. Mom laughs with me. The disease isn’t funny but sometimes the things that happen because of it are.”
  • “Leaning how to be gracious with people who want to fix you and your situation is a good skill to learn and not letting your inside voice get out when people are trying to help in a non-helpful way.”
  • “I am a great advocate for creativity being wonderful therapy and healing in nature.”
  • “Horticultural is excellent for people living with dementia and family.”
  • “I play piano, it is my creative therapy. Sometimes I make up sad songs – sometimes angry ones.”
  • “Creative, physical outlets like exercise, getting alone time to pray or meditate, being in nature, singing and spiritual strength as well as respite…all helpful to help you thrive as a person and caregiver.”
  • “Living in the moment is something I learned from my husband living with dementia – taking walks, watching birds, the clouds a sunset.”
  • “Our little dog is quite the tie that binds. It is really therapeutic for both of us.”
  • “Screaming in my car…letting out the anger frustration and resentment.”
  • “I prefer laughing to screaming.”
  • “Gratitude is another thing I recommend. This changes your focus and your thinking.”
  • “I got a book that a geriatric mental health person told me about by Oliver Sacks entitled “Gratitude”.
  • “Listing gratitudes and intentions is a process followed by a group called “Intenders”. This was a great support for me. (www.intenders.com) The exercise of intending takes one out of victim mode.”
  • “Books are uplifting too.”
  • “I really like the spiritual connection of this chat. I have experienced spiritual things that made grief more bearable.”
  • “When I’m feeling low, I listen to “You Can Heal Your Life” by Louise Hay or Wayne Dyer’s CD series from “Inspiration”. I always end up knowing I can handle whatever comes.”
  • “Having a passion of my own, apart from caregiving is good therapy.”
  • “Learning to be “weak” and ask for help, crying on the phone if necessary.”
  • A good friend of mine says she gets up every morning and puts on the song “Lord, I Need You”, and that helps her get through the day. I also get my strength from my faith and the faith community I am a part of.”
  • “I wouldn’t get out of bed for five years without meditating for twenty minutes.”
  • “Spiritual/Motivational music is something I regularly listen to. It helps me to re-focus on the positive and possibilities.”
  • “Music is an up lifter for me too. This year I have decided that I am going to sing every day, I am no singer, but it makes me feel good.”
  • “Sometimes music allows the tears to come which can be a good thing.”
  • “I am not different than who I was when I walked into this. But not entirely. Maybe I found more of myself and my own strength.”
  • “And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain: When you come out of the storm you won’t be the same person who walked in. That’s what the storm is all about.” Haruki Murakami

June Provincial Live Chat Summaries:

Participants:

Our June 2017 Provincial Live (typed) Chat event on www.dementiacrossroads.ca included thirty-three lived experience advisors from across the province and twenty two people emailed in their answers. Thirty five communities were represented and ten of these participants were from the South East Region.  

Topic:

With the Ontario Dementia Strategy determining adult day and evening dementia programs to be a key area of investment in their strategy, The BSO Provincial Lived Experience Advisory engaged individuals with lived experience in the provision of feedback on adult day/evening programs. The Advisory invited feedback from Lived Experience Advisory participants and also reached out to dementia adult day/ evening program staff, volunteers and participants from across Ontario. The Advisory hosted a (typed) live “chat” event, along with special guest Michael Campo, Senior Policy Advisory from the Ministry of Health and Long Term Care with tailored discussion questions. Thirty-three people participated in the live chat discussion and another twenty-two people submitted their answers by email or phone. Thirty-five communities were represented:

 The purpose of this conversation was to learn more about what’s working well in dementia adult day/evening programs and what barriers may need to be addressed to enhance the programs.  The Live (typed) Chat event (hosted on www.dementiacrossroads.ca) took place on June 21, 2017, asking the following questions:

1)    What elements make an adult day program successful?

2)    What barriers or challenges have you faced in accessing adult day programs?

3)    What services are not currently offered within adult day programs, but should be?

4)    What advice would you give to policy makers to enhance access to or enhance the impact of adult day programs in your community?

 

As a result of the discussions, key themes emerged:

• Access – how to find, qualify and gain access to adult day/evening programs; long wait lists; affordable programs; dementia-friendly transportation; how to promote dementia adult day/evening programs to the general public and reduce stigma

• Care and Compassion – continuous promotion of dignity and person-centered care; specialized training for staff and volunteers; support and education for family care partners

• Flexibility – needs-based meaningful activities that focus on strengths and capabilities; different options based on needs (e.g., bringing a bag lunch); programs for specific populations (e.g., hearing impaired, dual diagnosis and younger participants); crisis placements; flexible hours; and evening, overnight and/or weekend adult day programs

• Environment and Design – home-like atmosphere; outside spaces; quiet spaces; food prepared on site; and speciality services made available such as specialist consultations, bathing, foot care, beauty, occupational and physical therapy, social work, counselling, behavioural support, etc.

A more detailed review of the themes that emerged is provided in the sections following:

  1. What elements make an adult day program successful?

Key Findings:

  • Dementia- Friendly Accessible Transportation:

 

  • “Accessible door to door transportation is needed, particularly in the remote or rural areas.”
  • “So many challenges with getting affordable transportation for people living with dementia that doesn’t require a companion to travel with them.”
  • “Some major contributing factors to our successful program are the volunteer drivers who make it possible for a client to attend and staff who make it worth the client’s time.”
  • “In our area, the majority of Day Programs do not provide transportation, we work with the regional or public transportation services or other partners like Red Cross. However, the majority of transportation is provided by caregivers.”
  • “We rely on Red Cross/ Caravan and/or caregivers. In our area, Red Cross cannot accommodate wheelchairs.”
  • “Often these services are not always reliable, or pick up windows are not accommodating to people who work.”
  • “I live in North East Ontario; the distance is an issue. Our catchment area would be 60 to 70 Km each way to get to the central community. We have no access to any type of transportation other than that supplied by family caregivers.”
  • “We offer day programs with evening hours and weekends and our community service partner is not available at that time. Our municipal accessible transportation doesn’t recognize dementia on its own as a disability, so if someone is physically well, but is living with dementia, they do not qualify.”
  • “With our Young Onset Dementia program, we have to provide transportation for all participants because the spouses are working.”
  • “Transportation is a bigger issue with our evening and Saturday programs as some providers do not offer these hours.”
  • “In regards to transportation, we have buses on which staff are available. Some, but not all clients have a designated staff member on the bus. The staff member supports the clients and reduces absenteeism rates. Seeing the staff member at pick up enforces where the client is going for the day.”
  • “My Dad was too physically fit to take the wheelchair bus, so he couldn’t get to the day program in his area. It was a half an hour drive.”

 

  •  Meaningful Activities that Focus on Strengths and Capabilities Promoting Dignity and Independence:

 

  • “My husband was diagnosed with Alzheimer’s in 2014 and at the time he did not handle it well. Since then he has been attending the adult day program now three days a week. He enjoys it so much; he calls it “his work”. I don’t know what I would have done without this program. The staff are wonderful caring people and my husband enjoys the interactions with them and other clients.”
  • “The staff are outstanding and responsive to their clients and caregivers. There are strategic, appropriate programs that help clients maintain a degree of independence.”
  • “My husband’s day program was wonderful at keeping folks engaged and finding the things that they enjoyed and finding ways to include that in their day.”
  • “My father, a very shy and intelligent man, joined Adult Day in 2010-2014. We never thought he would go, but they knew him well, called it “his meeting” and he looked forward to it 3 days a week; we felt he was bored on the weekends at home.”
  • We have many clients who love attending once a week or on a daily basis, some call it school, group or club.”
  • We referred to the Adult Day Program as “The Club” and that is a more positive term. It suggests I belong.”
  • “The fact that my husband attends the day program in the same location that he goes for respite is extremely valuable. He feels he’s a volunteer when he goes [which gives him] purpose. As his behaviours are changing it is becoming more difficult though because there just isn’t enough staff to support these increased needs and the safety and acuity of the other people attending the program.”
  • “The person with dementia is treated as a person. The staff get to know the person. Perhaps this is because there are fewer people in a day program than in a home within LTC. The staff try to do things that interest the participants (e.g., reading, watching a movie, making a treat, eating a treat, playing bingo). As is stated many times, LTC is task driven.”
  • “Strong Adult Program Leadership is essential to a program’s success.”

· Caring, Safe and Homelike Environment:

  • “I think a nice “homelike” environment is key. We have different centers in different types of buildings and our most successful one is our location that is very homelike. It seems to have a calming effect on our clients.”
  • “All the staff are so great and compassionate.”
  • “Day programs are successful if you have the right environment and the right approach.”
  • “I have no idea how my husband and I would survive this journey if we did not have this support system. I truly believe I would be unable to carry on working as well as being an effective caregiver.”
  • “The Day Program was great for my mom for a long time. It was good because the people that worked there were caring, welcoming, they engaged her using likes and dislikes”
  • “Access to a variety of activities for the varying cognitive disabilities, appropriate supplies that are suitable for clients, functional stations for different activities, more community programs that come in and provide services to existing clients such as exercise, fall prevention programs, expressive art therapy etc.”

· Knowledgeable and Educated Staff who Value Person Centred Care :

  • “Continued education for all disciplines of staff is essential.”
  • “At our center, the day program staff are very well educated with credentials and stay updated with progress in research/the field by attending workshops and conferences.”
  • “The greatest element in a successful day program is the education and knowledge –base of its staff. My husband spent 8 years in an Alzheimer Day Program.”
  • “Montessori programming, meeting leisure needs and interests, knowledgeable and educated staff and a client centred approach is essential.”
  • “Well educated staff and ongoing learning opportunities on a regular basis for them to learn about different methods and techniques that are constantly changing within the activation field. Staff with good background knowledge, trained in fields such as therapeutic recreation. “

· Flexible Hours, Availability and Affordability of Adult Day Programs:

  • “Peer to peer support and education for family caregivers” was suggested by a participant as it was noted this would provide family care partners with the advice they need when difficult problems/questions arise.
  • “To my knowledge, there is only one secure facility that exists in our area which accommodates about 8 people and which gets fully booked very quickly. They cannot accept patients who require lifting or who have complex medical conditions.”
  • “Caregivers have shared with us details about programs that their loved ones attended including some offering some flexibility in hours and days of availability. More evening programs would help those caregivers who work a later shift, knowing that their loved one is cared for and enjoying the socialization of the program.”
  • “We need short term overnight respite because some of us caregivers don’t get enough sleep at night over the long term.”
  • “Overnight respite can help people sustain being a caregiver longer. Sometimes people just need a night or two. Many homes require a two week minimum stay.”
  • “There is a very serious lack of short-term overnight respite options for people with dementia. For the few programs that do exist, it is difficult to get a booking.”
  • “We often hear from caregivers that they would like us to provide overnight care and day care in the same place. They feel it would greatly benefit the client.”
  • “I really believe a major reason people living with dementia go to Long Term Care earlier than needed is ‘caregiver collapse’ without enough support. I have friends who have tried to get 2 nights a week overnight relief, but funding is so limited.”
  • “Affordability is also a real issue. Subsidies where families can choose how they want to spend their money whether on home care, day programs and transportation should be made available. More choice is needed for family care partners.”

· Additional Services and Programs that Target Specific Populations:

  • “In our region we have a unique program geared specifically to folks with Young Onset Dementia. Their own program, designed with activities they decide.”
  •  “Typically day programs serve people who are in more advanced stages of the disease. My wife has attended some programs available to the general public, but they don’t fit her needs because the leader is not familiar with the special needs of dementia. Not only do they not adapt their programming to accommodate the person with dementia, but they often unintentionally embarrass the person by centering them out when they can’t stay with the rest of the class.”
  • “Additional services, such as bathing programs, foot care, beauty salon; extended hours of operation, monthly caregiver nights (where clients are taken care of while caregivers attend sessions) would be helpful.”
  •  “Caregivers have said:  the day programs are filled with such great staff who are skilled to help with so many diverse needs. Many programs that are operated by our organization offer many internal and external services (e.g., chiropody, haircare, physio, bathing etc.) which are a big help for caregivers who have difficulty getting their loved ones out or have difficulty with limited resources. They also indicated more availability of evening programs to accommodate caregivers working evening shift and more transportation! Accessibility, Availability and Flexibility.”
  • “Occupational Therapy, Social Work, Physiotherapy would be beneficial.”
  • “For months now I have been trying to arrange interpreters for father (who is deaf) so he can access and participate in a day respite program. My mother and I have been told there are no funds available for service providers to provide interpreters for 1-6 hr day in a respite program. This is a violation of the AODA standards for people trying to access services. Prior to the day my father went to visit a day program we were told an interpreter would be available for 2 hours (not the 6 that was promised). After that visit, no interpreters have been provided by either OIS or the organization. All claiming funding issues. Deaf people who want to participate in these programs are forced to sit by themselves while people smile and make gestures.”

· Nutritional Meals and Snacks:

  • “Nutritional Meals and Snacks are important.”
  • A nutritional, hot meal is important. For my dad, that was the only real meal he got all day.”
  • “We have a chef on site. Food is a huge social feature. Also it is an activity, makes the environment more home-like and stimulates the appetite.”
  1. What barriers or challenges have you faced in accessing adult day programs?

Key Findings:

· Availability and Access – Long Waiting Lists:

  • “Waiting lists are a barrier. There are not enough spaces. My wife is on a waiting list for day program admission for 2 days a week. We have been on a waiting list for 8 months!”
  • “We also have waitlists of 3-5 people per day.”
  • “Our Adult Day Program waitlist sits at about 70 people and the person at the top of our waitlist has been waiting 8 months. In my situation (i.e., still working) day program is critical!”
  • “We are trying to offer innovative ways to create contacts and provide respite, in the meantime. It is unfortunate that by the time clients can enter our day program their decline has already been significant.”
  • “Long waitlists due to limited funding. The day program could accommodate more clients and staff if there was more funding to do so. There isn’t enough money in the meals budget or wages to feed extra clients for the day or pay extra staff to bring more clients, but there is room at the program to accommodate more clients and eliminate the waitlist.”
  • “There were 2 barriers. One was space availability. The Adult Day Program we used had a max of about 15 people. We had to wait about four months. Second was access. We could not use wheeltrans because they would not go into the apartment to get my mother nor go back and take her to the apartment suite. We feel that my mother would have gotten lost in the apartment building itself (being unsure what floor she was on).”

· Process and Referral Pathways:

  • “Our barrier at times is to get referrals. Our sole referral source is the CCAC and we sometimes have a hard time getting referrals sent to us.”
  • “Our challenge in attending the Day Program was the fact that the CCAC coordinator did not support a referral. It was only when my husband qualified for Health Links that he was able to apply. Better coordination between the LHIN and the day programs would be helpful.”
  • “Some barriers for people to get in our program include not having access to a doctor. We need a diagnosis of dementia for clients to come to our program and this can be a challenge to get at times. Sometimes families are not told that their loved one has dementia. This makes it difficult for caregivers to know what they are dealing with too.”
  • “With children being spread across our country, sometimes parents are being moved to different provinces so a son or daughter can look after the person. We had a caregiver call to try and get her mom into our program who moved to Ontario from Manitoba and is on the LTC list in Manitoba but cannot access community services in our province because the mother does not have an OHIP card. She could not afford to hire private care so what is her daughter to do?”
  • “All referrals to the ADPs are to come through the CCAC.  This has been a process we try very hard to support but the difficulty is the wait time a potential client endures from their initial request to the time CCAC is able to conduct the RAI HC assessment.  CCAC Care Coordinators have large patient portfolios and are not always able to schedule the assessment within a one or two week window.  I do have a coordinator that is trained to conduct the RAI CHA assessments and could get out to a potential client’s home immediately in order to minimize the wait time to onboard a client.  We have noted that if a potential client and caregiver are made to wait for a lengthy period they have commented perhaps it is not a crucial request and will make do with no additional supports.  We then get calls and lots of tears due to caregiver burnout, sickness, etc.”
  • “Privately owned day programs are not given to families as a viable resource when they are seeking services from CCAC.  They may only be entitled to one or two days under CCAC.  Some families need more support and this is where privately owned seniors day program can be given as a resource instead of having senior wait on long waitlists.”
  • “We need to move away from CCAC held waitlists and offering openings/spots to people who are ready to attend today.”
  • “It would be helpful to have more flexibility and more than one access point for referrals.”
  • “As CCAC are responsible for managing our referral list, it is important for the lines of communication be fluent and that all case managers are aware of the services that Adult Day Programs provide. It can be challenging for the caregivers waiting for them to send the referral through in an expedient manner.  In our day program we consider all clients and welcome them to come and see the program first and we will then send the referral over to the CCAC.  If we miss this important step, we may run the risk of losing the client as caregivers can find navigating the system a challenge and the barrier to service becomes more evident.”

· Communication Between Day Programs/Community Services and Shared Records:

  • “I think more communication between the day programs would help especially if there are shared clients.”
  • “And with other service providers, shared records would be great support.”
  • “It would be great to have access to the CCAC CHRIS database, so we could communicate with care coordinators about clients, rather than playing phone tag for weeks on end.”
  • “It would be great to be able to write a note to a care coordinator so she/he could follow up in a timely manner and create a better more seamless service.”

· Better Promotion of Programs, Education and Help to Families Navigating the System:

  • “For new caregivers, they need to know what services are available and how to start.”
  • “The day programs are not properly promoted or represented. Information on day programs should be more readily available and should be discussed as an option. Some caregivers found that in hospital this information was by-passed for automatic conversation about retirement or long term care. We should have a section on the government’s website to explain/see what is available to a caregiver. There also should be brochures of all adult day programs in specialist/doctor offices.”
  • “There definitely needs to be more education to the public about day programs and their benefits. Often people only know about LTC or retirement and adult day programs are significantly more affordable than home care.”
  • “Agreed, I did not get any info about Adult Day Programs until one year after my wife’s diagnosis.”
  • “We often hear from caregivers that they wished they knew about Adult Day Prpgrams sooner. Many say they wished primary care had known about it at a time of diagnoses and provided them with information.”
  • “I heard about Adult Day Programs in a group coffee break; apparently the Adult Day Program was the “best kept secret” in our area.”

· Increasing Adult Day Program Staff Wages to Improve the Retention of Skilled Employees

  • “Specialized training needs to be made available and wages must be increased. We are in a constant battle of good team members leaving for high paying LTC jobs.”
  • “There needs to be enough funds to pay for the program.”
  • “There needs to be recognition that we serve a very complex group of folks, risks have increased and funding has not kept pace.”
  • “We will need increased funding to retain valuable employees.”

· Location, Affordability and Accessibility:

  • “The location can be an issue. It might not be a senior populated area. Also, some facilities are not wheelchair friendly.” 
  • “The fee to attend our Adult Day Programs is $19.00 per day.  This does pose difficulty for some clients because they also pay other agencies for transportation to and from our programs.  Quite often I am providing a reduced fee for clients if deemed essential.  Do we foresee a time when the ministry will absorb the entire fee to better support these vulnerable clients?  Doing so would increase the number of clients registered to our programs and would also allow clients to attend multiple days each week rather than just one attendance each week.”
  1. What services are not currently offered (or are not widely offered) within adult day programs, but should be?

Key Findings:

·  Personal Care, Specialty Care, Education/Training & Behavioural Supports

  • “Bathing, Foot Care, Falls Assessment.”
  • “We do not have foot care or dental care onsite in our area.”
  • “Exercise Programs, Nutrition Education, Senior Abuse Education, PSW Services on site to provide assistance with personal hygiene and feeding, Musical Therapy.”
  • Assistance in getting the individual ready to leave home in order to go the program, healthcare monitoring by qualified staff on issues such as medications, blood pressure, blood sugar levels, cholesterol, dressing changes and general health status and Multidisciplinary consultation which includes Physical Therapy, Occupational Therapy and Speech Therapy to enhance physical and cognitive functioning, thus supporting independence with activities of daily living.”
  • “It appears that there is not enough home care hours offered for bathing.  The Adult Day Programs could offer bathing to existing clients, and also consider offering a bathing program (shower) to clients in the community.”
  • “Offering bathing for a charge takes so much stress off the caregiver. Also, many families do not require adapting their own homes to accommodate changing mobility and dementia design needs for bathing.”
  • “We have trouble accommodating folks who smoke. Our program area is secure and there is no way for us to provide a staff person to accompany someone outside for a cigarette.”
  • “Counselling for clients would be beneficial. Clients who are in emotional angst need academically trained people to help them. Validation only goes so far.”
  • There is a need for accessibility/availability for programming for younger adults with Alzheimer’s. Perhaps offering a program for children and youth that could help these younger families cope with the changes with their loved one, parent or spouse.”
  • The folks in our region named themselves YODA – Young Onset Dementia Association their program is focussed on activities in the community as a group, volunteering, visiting, historic sites etc.”
  • “Also, those with developmental delays, who are living with dementia, are limited when it comes to their care needs. “
  • “I feel a social worker should be available for caregivers. Is there any day program that offers this support to families?”
  • “Some of our folks would benefit from 1:1 attention, but that is not sustainable to help manage responsive behaviours.”
  • “There are more complex clients waiting to attend. If we could have LHIN-funded nursing staff, GAIN team support staff make visits to the Adult Day Program, we could take higher needs clients.”
  • “BSO onsite staff has been wonderful for helping us with strategies for our clients with responsive behaviours’ the role of the Community Support Worker is great.”
  • “Nursing support is key. Medical issues and concerns, mini strokes and UTI’s are constant. Families need knowledgeable eyes and ears to prevent further issues.”
  • “We have clients who need a de-stimulated 1:1 environment, however we are situated in a group environment – it takes a really caring and stretched team to provide the quality care.”
  • “Space that involves secure outdoor space and space to rest or wander without risk of harm.”

· More Short-term Overnight Respite, Flexible Hours and Programming:

  • “I think that services, such as weekend day programs might be helpful for some caregivers. Our program runs Monday to Friday. Their caregiving does not stop on Fridays. We don't have the funding for this.”
  • “Day Programs offer some overnight and respite relief to caregivers.  Our program is funded for some overnight weekends, but the program lies idle every evening, when the space could be better utilized.  The overnight respite proves costly and the day programs are not funded for enough overnight to staff and run on a regular basis.
  • “There should be freedom of choice through the day. Active places, quiet relaxation places and even nap rooms available.
  • “If it was not for respite stays (3-7 days) I was not able to attain for my husband, I would never have been able to have cared for him at home for the 8 years.”
  • “Having a drop-in program for caregivers needing help and having “crisis spots” available would be very helpful.”
  • “I think it’s not about separating the younger from the older, but offering a variety of programming choices so that its small groups based on friendships and interests.”
  • “Private day programs should always be given as an option through CCAC.”
  • “Day programs that have their own vans/buses for transportation of participants and offer total door to door assistance.”
  • “We offer the daily program fee, separate from the meal cost, so they can choose to bring a meal or purchase a light or full meal, depending on their budget.”
  • “Flexibility of when day programs can be used; occasionally, 1 day a week, 4 hours a week etc. Every family’s needs are different.”
  • “Flexibility in the scheduling of services. Some clients go away with their families for several months then have to reapply through CCAC when they return.”
  • “Some caregivers have expressed why can’t they choose the day programs they wish to apply for? Why the middle organization as the gatekeeper deciding where they can and can’t go?”

 

  1. What advice would you give to policy makers to enhance access to or enhance the impact of adult day/evening programs in your community?

Key Findings:

  • “More transportation funding; especially in rural areas. Including staff and money for upkeep/replacements of vehicles.”
  • “More sites so waitlists can ease.”
  • “Simplify process to gain info and apply.”
  •  “Invest in more dementia training program for your staff”
  • “Caregivers should be able to give feedback on the process from referral to integration in the program; more program spots and transportation.”
  • “Provide more funding for expansion of facilities, staff, services and operating hours. Simplify intake processes by not having only one access point.”
  • “Increase promotion and accessibility.”
  • “Improve the quality of care at the various sites. Maybe we need to template better programs for the other current locations. Waitlists are longer for the better sites.”
  • “Educate the public about the day programs. Work on removing the stigma.”
  • “Bring in equity in quality, fees, funding and increase access across all Adult Day Programs.”
  • “More research done to help prove the positive effects of day programs and their care partners. Anyone who works in day programs knows how they improve quality of life.”
  • “Provide Caregiver hands on training labs.” “Caregiver Labs! Yes, actually the Sinai Health System through the Reitman Centre offers caregiver training.”
  • “If Long Term Care was run like Adult Day, the world of people living with dementia and their families would be a better place.”
  • “It would be good if funding for Day Program fees were consistent across the LHINs.”
  • “Conversations between ministries are important, as dementia and Adult Day Programs extend beyond health. They also affect transportation, social affairs, finance etc.”
  • “Have more programs in each city. Provide more subsidized services to the seniors for the day program and transportation which will pick up clients who are stable regardless of their mental or physical limitations without having to have a person travel with them. Help with promoting and advertising local day programs and have a list of all day programs and refer clients to appropriate programs based on client’s needs, locations, service etc.”
  • “Put more funding into the day programs.  You get more “bang for your buck”.  It is a cheap service to deliver for the clients considering the alternative of hospital stays and long term care homes and it aids the caregiver in giving them a much deserved break.  The caregivers are able to cope more in their caregiving role and may not prematurely admit their family member to long term care.  If there was more funding offered for staffing, meals and program supplies the day programs could accommodate more clients and eliminate or dramatically decrease the waitlist.”
  • “Make adult day programs accessible once people enter Long Term Care. I found that this is truly when I needed them the most. They also make a great transition to and from Long Term Care. Why? Does anyone really think that Long Term Care offers a significant amount of activity to fill the world’s longest days?”
  • “Expand and consolidate services at adult day programs, increase service frequency, expand services to clients with responsive behaviours, establish day programs for low intensity clients and coordinate with senior centres as possible locations. Improve coordination between hospital discharge planners and CCAC case manager to avoid overlooking referrals. Expand overnight options and caregiver-training initiatives.”
  • “To offer more funding for transportation for people in rural areas. Also, more of the health care sector need awareness of these programs and refer people when the need is there. Often times, people come too late in the disease process and should be here earlier, so that the caregiver has rest sooner than later and that he/she can maintain hobbies, friendships, and their health better because once they are compromised, they are difficult to get back.”
  • “We would love to see a stronger connection to Geriatric Medicine, geriatric nurse practioner and memory clinic, so that they could come and observe when there are responsive behaviours and make medication changes as appropriate.”
  • “Stigma and lack of access to programs in a person’s own language are barriers.”
  • “More spaces and be available both during the week day, week evenings and on weekends.”
  • * “Further emphasis made on nursing staff being made available on site. Nurses do not need to be available full time (to assist with cost savings) but have a significant impact on health monitoring and can administer medications.”
  • * “Caregiver Support Groups during the day and in the evenings while their family member is attending the program.”
  • * Participants recommended including Food Banks, Meals on Wheels, Bereavement Services and Social Workers at  Adult Day Program locations in order to create a one stop shop with social services needed by older adults living with dementia and their family/care partners.”
  • * Participants recommended not using the word “dementia” when naming/branding adult day programs due to increased stigma and also since programs include both people living with dementia and those who are not living with a dementia.

* Comments added from Tuesday, July 25, 2017 Provincial Lived Experience Advisory Meeting.

 

Spend some time in an adult day program. The magic and impact is hard sometimes to describe; seeing the value might help policy makers understand the needs.”

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