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February- March 2018 Lived Experience Resource Exchange Summaries

February – March 2018 Resource Exchange Summaries

Summaries Resource Exchange:

Who? 

This Lived Experience Resource Exchange for February – March 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 39 people from across all of South Eastern Ontario. 36 people were spouses, adult children, family or friends and 3 people were older adults living with a dementia, mental health or other neurological disorders. 

How?

Advisory conversations in February – March 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.

February –March 2018 Resource Exchange – SE Ontario Lived Experience Network 

February – March 2018 Face to Face Advisory Conversation Summaries:

Face to Face Advisory Meeting Findings

Supports That Helped:

  • “Our doctor has been wonderful. We were fortunate because we stumbled into the right answers every step of the way. I know it’s not like that for most people.”
  • “It was our oncologist that picked up on the cognitive issues my husband was having. He was very helpful and got us connected with the right supports and information.”
  • “The Adult Day Program has been so very helpful. That and the Alzheimer Society are what have kept us a float.”
  • “We experienced amazing care and concern. When the Geriatric Psychiatrist had to take away my husband’s license, she did it in such a loving and compassionate way. She even gave him a huge hug.”
  • “I love that we can get respite on weekends the same place as our Adult Day program. It is familiar and safe for him and he responds so well.”
  • “I feel comfortable that I know what do to and who to contact when things change for us and we need more help. I have numbers and contacts.”
  • “The early stages support group and the coordinators have been so helpful. I have learned so much.”
  • Participants mentioned they found different programs and services re: wandering helpful – like Project Life Saver (something that covers all of Hastings County).
  • Some participants are taking part in drug studies with Providence Care and have found that to be a very positive experience.
  • “The peer to peer support and information I have learned from the Alzheimer Society support groups has been amazing. It is the key to me being able to handle this.”
  • “I have nothing but good things to say about my Dad’s Long Term Care home. They are kind and treat him with dignity. I think the staff are amazing.”
  • “Thank God for this support group. Everyone helps and shares. It is a total life saver.”
  • “I get the same PSW every time and she is a total angel. She was a great help to my wife when she was alive and just makes my life better.”

Challenges:

  • “One big barrier to getting help and a diagnosis for my husband is I know they might take away his license. He only drives with me and is a very good driver but we hear from friends that they will take it away as soon as they find out he has dementia. I know the day will come, but it is going to be terrible for him to lose that independence- so much so we are waiting to talk to the doctor about it.”
  • “There needs to be more supports for older people that are not internet based. My dad needs a navigational tool that he can use that isn’t just a website.”
  • “I don’t think it is right that Memory Clinics are linked to Family Health teams. We can’t get a doctor in that family health team and therefore we can’t benefit from that service – it should be open to everyone in the community.”
  • “I hate it when they meet my Dad and say to me, “Well, come back in a year.” I feel so lost and alone in all of this. I need to believe that someone is looking after us and that I’m not just doing this all by myself. When we lived in Toronto they saw us every 3-4 months.”
  • *Participants mentioned issues around not being involved enough in conversations about their parent or spouse with doctors, specialist and geriatric psychiatry due to privacy. Others mentioned the feeling that they were not “heard” or shown empathy and concern through various people who were planning and providing their care. “It makes a difference if they care or not…all the difference in the world!”
  • “I believe Long Term Care and Retirement care is going to have to change. We are going to have to get creative and come up with some affordable and workable solutions like group homes and staffed assisted/independent living housing.”
  • “I find when they are offering me respite help in the home that whether or not Mom has fallen is the big ticket to getting help. They have told me “You’re mom hasn’t fallen lately so we are cutting back her hours.” But maybe she hasn’t fallen because she has had sufficient support. We need to start seeing the cognitive issues as important as the physical ones for getting care. Mom is prone to delirium and UTI’s the results of that leaves us completely wiped out.”
  • “There is a huge gap when it comes to hospitals and caregivers. They don’t have room for people and they are pushing them out long before they are well. I faced relentless pressure to bring Dad home and the information you got from day to day was often different. I’d cared for Dad for years at home – I knew I couldn’t manage him.”
  • Participants shared examples where their primary care physician did not act when family members brought their concerns and observations and refused to refer to other services or make recommendations.
  • “I’m always afraid they are going to cut back the hours of support we get at home. I am just managing now, if I lose any help I don’t know what I am going to do.”
  • “We need more resources like the SMILE program.”
  • “I think we need to have local agencies scheduling PSW staff The way it is run now is a mess. Staff are coming from all over the place. There’s no consistency for the staff.”
  • “Co-ed rooms in hospitals!! That is not ok. I had to stay in a room with men.”

February, 2018 Live Chat Summary – SE Ontario Lived Experience Network 

February 6, 2018 SE Ontario Live Chat Topic:

Background: The South East Local Health Integration Network in interested in improving the coordination of care and communication for patients who go to a primary care physician and also use Home & Community Care services (formerly called Community Care Access Centres – CCAC)

  1. Question: We would like to hear about your experience with moving between primary care (your Doctor and/or Nurse Practitioner) and Home and Community Care. What parts of your care delivery have gone well, and what parts do you believe could be improved to make your experience better?  

KEY FINDINGS FROM SE ONTARIO LIVED EXPERIENCE MEMBERS:

What parts of your care delivery have gone well?

Seamless Processes, Consistent Care Providers, Clear Lines of Communication and Collaboration between Health Care service providers and Case Managers:

  • “Our neurologist told us about the Alzheimer Society which is how we found out about CCAC, so that was somewhat helpful.”
  • “My experience with CCAC (now HCH) was seamless because I had the advantage of knowing the care coordinator and was familiar with the process.”
  • “My experience was eight years ago, but I cannot say enough good things about CCAC. I suppose because they had already been in my mother’s apartment caring for my brother, the whole process was pretty seamless. I am not sure if the family doctor had much involvement since his first arrangement was for my brother. When my brother passed CCAC just seemed to continue to care for Mom. I am pretty sure they were the ones that got her involved in the day care program at the Alzheimer Society.”
  • “The Alzheimer Society staff were the ones to shepherd us through the process.”
  • “I think the Memory Clinic approach is a really good one – with all the different parties: families, doctors, nurses, social workers and the Alzheimer Society staff present for discussion and developing care plans. From what I have seen that is working really well and ties back to the person’s family health team.”

What parts do you believe could be improved to make your experience better?  

Gaps in Communication, Lack of Navigational and Emotional Support, Not Engaging with Person and Family Early Enough in the Process and Duplication, Issues around Privacy and Consent:

  •  “Unfortunately, our first doctor was not particularly helpful. He didn’t take our concerns seriously or refer us to any supports or services.”
  • “For me, I feel like I am the communicator. For instance the Care Coordinator advised me that they had not received the medical form from the NP. I called the NP and she did not receive it from HCC. I had to call HCC back to ask them to please send the form to the NP so it could be completed. This communication gap has caused a delay of about 1 month for getting on a waiting list for LTCH.”
  • “Knowing where to go for help was an issue. Our family doctor did not tell us about the Alzheimer Society or about CCAC (now HCC). Answers and support were very erratic and superficial.”
  • “I contact HCC a few months back and they said that if I didn’t need help at the time there wasn’t much use in even registering with them. I thought it would have been beneficial to at least get on their “radar”. It felt like if you are not in dire straits don’t waste their time. Fortunately, I am part of a caregivers support group and have gotten tons of good information from them about how to navigate the system- but it’s too bad that it didn’t come from HCC directly. If we only operate in crisis mode that doesn’t lead to a very smooth transition.”
  • “There is definitely a gap between the primary care and the care coordinator. I hope the integration of CCAC-LHIN with primary care by an embedded care coordinator on site will make for a closer partnership in care (Patients First).”
  • “My friend’s mom is going through this right now. She is just getting to the stage where she is going to need some help to keep caring for her husband at home. She phoned HCC but didn’t have the words to explain what she wanted. No one at her family health team or HCC has given her any information about Adult Day, in-home respite or talked with her about next steps.”
  • “I found out this week from one of the Long Term Care Homes we’ve applied to that they still have not received the application. So it is still delayed.”
  • “I also hope the care coordinators become embedded with family doctors and/or Nurse Practitioners. That would cut out the need for caregivers to be calling and ensuring appropriate forms are completed.”
  • “Caregivers who are exhausted and unsure of what resources are available should not be expected to navigate the system of care.”
  • “Another experience I had was it was three phone calls with three different people for a phone assessment that eventually led to a home visit. Each of those people had a role to play. All of which could have been completed in one phone call and then a home visit. The process has certainly changed and is a mechanistic approach to care.”
  • “In my experience family doctors are very uncomfortable about dementia…maybe because they can’t fix it?”
  • “I have a great family doctor who is very supportive but I don’t honestly think she knows how to navigate HCC and access increasing levels of support as the disease progresses – and she’s one of the good ones!”
  • “We need knowledgeable care teams. I was educating the teams as I was advocating for support…and I think about the poor family physicians and NPs…they have to know everything from babies to older adults and all of the diagnoses in between. I can’t imagine the pressure on them.”
  • “One of the barriers to clear communication when supporting a person living with dementia is access to information. Who needs to know what? When and how much personal information can you divulge? I am sure there are some legal limitations…Let’s say that my doctor diagnosed me with Alzheimer’s and I really don’t want my friends or family to know. I can see that happening. Should the doctor share that with HCC without my consent? I think this may be a stumbling block for doctors. They can’t really flag a patient in a system without their consents. In the early stages they can’t over step this (like later on when there is risk of them harming themselves or others) and yet that’s when you want them identified – early intervention is so KEY.”
  • “I know doctors can’t divulge information to you (a family member or friend) about their patient. There is tight legislation about privacy, but we should be able to give important information (like noticing changes in our family member’s driving or day to day abilities) and know that information is welcomed even if we don’t ask for information in return.”
  • “I think a realization that when a diagnosis is made, someone other than the person being diagnosed has to be contacted to also sit in on Doctor and HCC meetings. How would I really know what my Mom was told or not told. I am sure there are things she did not share with us. Family communication is key in making decisions and we really were not kept up to speed on anything that was happening or what choices we had other than long term care.”
  • “Cognitive Assessments are not enough. My mother fooled her GP for years…another reason why home visits are so helpful in assessments.”…”My Dad passed the questions for a long time when he clearly had dementia. Somehow he could pull it together for that.”…”My mom passed the questions in the height of a delirium.”… “Some are relying on screening to make a diagnoses missing the mark of a comprehensive assessment.”
  • “My husband was diagnosed with “Young Onset Dementia” at the age of 61. My experience with HCC and our family physician were very good. The main challenge I faced was trying to access Seniors Mental Health.”
  • “Things have changed since CCAC/HCC amalgamated. It didn’t use to take three phone calls with three different people just to get a phone assessment that led to a home visit.”
  • “Consistency is an issue. Our family had three different case managers from just moving across town.”

Suggestions:

  • My experience with CCAC was pretty positive but I keep thinking we need “navigators” – “nurse navigators” - should that role be integrated into the LHIN/HCC as part of the care coordinators role to an enhanced level from what it is? If we can’t fund nurse navigators, it could be funded in a dual role coordinator/ navigator - in other words, instead of assignments being related to geography or particular family doctors, have coordinator specialists in dementia who are well educated on the appropriate care paths.”
  • “Generally, your first point of contact about dementia is your doctor. If they are linked with HCC communication should be clearer and there would be less duplication in filling out forms. It might also prompt family physicians to be more mindful about providing supports and being collaborative.”
  • “It might be helpful if HHC maintained a data base of people with a diagnosis of Alzheimer’s and where they are on the spectrum. It seems that by ignoring those recently diagnosed or early on in the disease, they are missing opportunities to be proactive in the delivery of care. Wouldn’t it be nice if they called me every three months to see how it’s going and if there have been any changes?”
  • “I can recall a time when CCAC had case manager who were specialized in dementia care – that changed when they were assigned to regions….It might be easier if the Care Coordinators went back to specialties rather than geographies…for navigation that it.”
  • “First Link was to be the gateway between the Family Physician and the Alzheimer Society support…I understand that is being rolled out through the Dementia Strategy.”
  • “A doctor shouldn’t have to know how to navigate a service, but the service should be the Rx for the patient on diagnoses…they either need the knowledge or someone linked with their office to help pass along those referrals and/or navigational tips and support.”
  • “Even doctors need a support system…so much is needed and education of health care providers is critical, but they need a support person/system for consultation even considering the constant changes in programs and services.”
  • “I have received many letters in the mail for screening of Breast Cancer and Colorectal Cancer. Perhaps a screening like any other when you reach a certain age is a good idea, apiece of the puzzle and becomes routine.”
  • “You could flag MoCA on the screening that includes Mammogram, FOBT, Immunization etc. to trigger the need for assessment or re-assessment.”
  • “Automatic screening at a certain age and if flagged then the doctor has the right to call HCC is an idea…however, what is the difference between screening for cancer and for AD? – Is it stigma…or perhaps that there is potentially a cure for cancer?”
  • “If the MoHLTC could get universal health records in place that would be an asset to all…especially caregivers.”

 

February 2018 Province Wide Live Chat Summary:

Behavioural Supports Ontario Provincial Lived Experience Network Advisory

Background:

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.

Participants:

Our February 21, 2018 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, Brockvile, Chatham, Toronto, Brighton, Cloyne, Smiths Falls, Brighton and Mississauga, Ontario. Dr. David Ryan (Director of Education & Knowledge Processes, Regional Geriatric Program of Toronto, Assistant Professor, Faculty of Medicine, University of Toronto and Consulting Psychologist, Sunnybrook Health Sciences Center.) was our special guest and brought us the following topic question:

Topic:

The Regional Geriatric Program in Toronto have developed a Senior Friendly Care Framework identifying the “Senior Friendly 7”  -seven areas suggested by research for which intervention would be most beneficial to older adults who are frail or at risk of becoming frail.

These seven areas are: 1. Cognition/Delirium, 2. Mobility, 3. Nutrition, 4.Polypharmacy, 5.Pain, 6.Continence and 7.Social Engagement.

 “When reflecting on your own lived experiences in dementia care as a patient or family care partner:

  1. In what ways would a review of the Senior Friendly 7 topics (SF7) be helpful where and whenever the health care systems connect with older adults? How would routine review of the Senior Friendly 7 topics help older adults when they need to connect with health care systems?
  2. How would routine review of the SF7 topics help (or have helped) when you touched base with health care professionals?

Key Findings:

The Need for Family/Care Partner Support and Respite:

  • “I can finally get a full night's sleep these days. It had been exhausting. It has taken a long time to get back to some sort of ‘normal’ energy level.”
  • “As a health care provider and daughter I am keenly aware of caregiver burden. I try to approach my clients and caregivers living with dementia as a unit. I spoke to a group of informal caregivers yesterday associated with a local Family Health Team and Health Links. Primary Care is not meeting the present and anticipated needs of persons living with dementia and their caregivers.”
  • “I truly believe that caregivers are at great risk, not only to themselves, but will put a burden on the healthcare system that will get worse if it is not dealt with.”
  • “My biggest ‘beef’ became lack of sleep. Not much could be done about that, short of affordable, available short term respite, which is almost non-existent.”
  • “It took my mom so long to get ready and out the door to get to Adult Day, that I took myself out of the workforce.”

The Need for a Holistic Approach to Care:

  • “From my vantage point, the seven things are often dealt with individually, but rarely are they dealt with collectively, and that’s the problem. Very few health care teams can deal with all 7 well, but that’s what our seniors and their caregivers need.”
  • “I would have appreciated a review of the SF7 for my family member who presented with weight loss and the prodromal anxiety. The focus was on the weight loss and not the underlying cause or rule outs. I had to advocate for a cognitive screen. I basically gave them a full assessment and only asked they do a cognitive screen, refer on to Seniors Mental Health Outreach, and ask her to stop driving. They advised me they could not act on my concerns because at the time I was not listed as next of kin. It was only after she crashed her vehicle that I was able to get things moving. I agree - things are dealt with in isolation and the person is not seen as a whole.”
  • “I’m going back to the idea that these things are all interwoven. I know we had trouble getting my grandfather to adult day because of his cognition and mobility. He lived in a rural area, never had a driver’s license and never cooked until my grandmother went to Long Term Care. He couldn’t get himself ready in time for the program and he didn’t qualify for help and family all lived at a distance.”
  • “We really need to look at all these issues as one bigger solution.”
  • “The issues with incontinence often start years earlier. Advertising to boomers normalizing use of incontinence products is a huge problem. Pelvic floor strengthening needs to start sooner but primary care is not asking the questions. Urologists are more focused on prostate issues! The remaining 6 domains of SF7 need to be considered with risk mitigation around incontinence: Cognition/Delirium, Mobility, Fluid intake-Nutrition, Polypharmacy including sub use, Pain, and impact on Social Engagement.”
  • “There are limitations on use of some pain meds so we need to broaden that approach to include all and any comfort measures. As for polypharmacy we need our health care providers partnering with pharmacist to do medical reconciliation and de-prescribing as needed.”

The Need for SF7 Education and Delirium Recognition and Management:

  • “From my perspective, delirium was never even on the table as a discussion point. People talked about cognition, but I had no clue what delirium was or what to watch for. That information would have been extremely helpful to us as we touched the different health care systems.”
  • “Education (about these topics) is needed at the college and university level and further capacity building in the field.”
  • “Delirium recognition and management is a huge issue across the sectors of care.”
  • “Delirium awareness and prevention is quite shockingly missing.”
  • “Teaching family caregivers is critical, but even ED staff need education. For example a person may be confused, have as slight fever but let’s do CXray when it might be faster to do urinalysis.”
  • “Family care partners should have this knowledge but they also need to be empowered.”
  • “Education for family care partners is especially important when it comes to things that may be medical emergencies such as delirium.”
  • “If family care partners know what to ask for, we’ll be in a better place to improve our health care results.”
  • “I think it is so important to emphasize ability preservation.”
  • (In regards to education about mobility and the importance of exercise): “The seniors we met with to talk about the SF7 told us not to say exercise or physical activity but “motion is lotion” was Ok.”
  • “Families need to understand there comes a time when certain medications are more of a risk than a benefit. Sometimes caregivers may equate stopping certain medications a giving up on recovery…they also need to know about over the counter things like Gravol, Benadryl, any over the counter meds that dry you up and make you drowsy can be a risk for delirium.”
  • “Educating people about the real reasons they take meds is important. My 85 year old aunt, who has profound hearing loss but nothing wrong with her cognition, was prescribed lorazepam for dizziness! She’s had inner ear issues all of her life, but someone must have thought it was something else. If I hadn’t known and taken it from her, she would have taken it and likely fell and hurt herself.”
  • “In terms of polypharmacy, being included in the SF7, I think it makes sense. We should have more knowledge of common interactions.”

The Need for a Standardized Approach

  • “As a geriatric mental health alumna, I default to the PIECES framework which covers all these SF7 domains…even at care conferences and review of my mother’s care needs in long term care.”
  • “I think reviewing these seven topics has to become a part of the various health care systems universal focus – whether that is the Home and Community Care, Emergency Care of Family Physicians. It needs to be as common of a focus for assessment – just like PIECES. Right now caregivers have to be their own advocates.”
  • “In our family situation, I was able to guide the assessment from our Primary Care provider. Then when she went into delirium where I had to take her to Emergency, again I had to guide the assessment to ensure delirium was considered and it wasn’t assumed that this change was a result of Alzheimer’s disease. We need a standardized approach in primary and acute care.”
  • “I would be interested to see how the SF7 could be adapted into Community Health Centres and Family Health Team models of care. From the rural perspective Community Health Centress have a more comprehensive wrap-around approach to care. Are there tools that can be accessed?”
  • “With First Link program and education a number of years ago, I found that people found the PIECES acronym helpful. (Physical, Intellectual, Emotional, Capabilities, Environment, Social)…this encompasses the SF7. A tool for caregivers would also be so helpful.”
  • “When it comes to pain, with the PIECES assessment, we always have to be watching for their reactions and try to discover the causes.”

SF7 Barriers

  • “At home, addressing delirium was a challenge due to poor mobility – getting the urine sample order, getting the sample itself, getting the sample to the lab etc.”
  • “The LHIN has recently boosted funding to our Adult Day programs and offered free transportation until the end of March for clients who need it – many clients tell us they have a hard time arranging for families that work.”
  • “Transportation to Adult Day Programs is challenging.”
  • “Community care drivers are wonderful, but not all families can afford it. Access buses are great too but drivers to no assist clients into the building. It is kind of a drop off routine.”
  • “In my work, transportation to our day program is an issue as well. With the increase in clients, we are experiencing more and more people living in poverty. We subsidize using donations.”
  • “Accessing services of any kind is difficult in the North outside the major centres. But, we have a solution coming. Algoma district is in a program to evaluate a Rural Health hub. We have committees that include all aspects of the lives here. We are not tied to the Ministry of Health and Long Term Care. It has been an intense exercise but we are gathering all resources in the district and they are trying to develop agreements that will provide links. The problem is financial support. We need this without cutting current budgets.”
  • “Care and access has to be universal no matter where you live in the province. You can’t suffer financially or otherwise because of where you live.”
  • “The nearest day program to me is in Sault Ste. Marie which is 90 Km one way.”
  • “Re incontinence: in LTC I still want to take Mom to the washroom when she is able to tell me she has to go, but I have been advised for both our safety I can no longer do that. She has good mobility and bad mobility days, I understand that, but who does someone who is expressing the need to use the bathroom have to go in a diaper?”
  • “Re incontinence: it is really hard for family caregivers to get a urine sample from a person living with dementia. I was hoping the incontinence clinic would offer it as a service, but they do not.”
  • “If I wasn’t my family member’s navigator and advocate there would be huge issues because of polypharmacy. She ended up at Emerg. where the MD handed me a prescription to discontinue 1 medication and added on an antipsychotic. Because of my knowledge, I did not fill the prescription because that would have caused a worse delirium than she was already in. My concern is the caregivers who do not work in the field. My husband would have followed “the doctor’s orders.”

SF7 Successes

  • “Once the diagnosis was made, I found that the Adult Day Program, which mom attended for five years seemed to help delay the progression of the disease and their daily exercise program has kept her mobile.”
  • “Regarding social engagement, The Adult Day Program my mother attended was a great help and she would be already to go two hours ahead of time.”
  • “As for social engagement, in the LTC home where mom lives, the residents are kept very active all weekdays, (weekends are a little less) but weekdays: art, cooking, socials, music, outings…I could go on and on. They even have tables set up where you can sand blocks of wood, fold and match socks or tend to babies in the nursery.”

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

                             

March SE Ontario Live Chat Summary:

Tuesday, March 6, 2018 TOPIC:

SE Ontario Topic: Person Centred Care is widely considered to be one of the essential frameworks for caring for a person with Dementia.  Recently, the BSO Provincial Lived Experience Advisory has done some tremendous work identifying Personhood tools that can be used to help provide Person Centred Care. However, we know that there are many barriers within our health care system to providing Person Centred Care, especially for people with Dementia. Tonight’s question comes from Kim Schryburt- Brown, Clinical Resource Project Consultant of Seniors Mental Health, Behavioural Support Services Providence Care

Background:  Person-centred care is a philosophy that recognizes that individuals have unique values, personal history and personality and that each person has an equal right to dignity, respect, and to participate fully in their environment.

Common Themes in Person- and Family-Centred Care include:

 1. Establishing a therapeutic relationship for true partnership, continuity of care, and shared decision

 2. Care is organized around, and respectful of, the person (For a person to be satisfied with health-care services, care must be organized with and around the person. It should be respectful and reflective of the person’s voice, needs, culture, values, beliefs, and changing health states and life circumstances. )

 3. Knowing the whole person (holistic care) A person is not defined by their disease or their illness.)

 4. Communication, collaboration, and engagement.

Questions:

  1. Have you experienced Person Centred Care, either for yourself or for someone living with Dementia?  (Please consider sharing your experiences, how you know it was Person Centred Care, and if this approach helped or hindered the health care provided?)
  2. If you have not experienced Person Centred Care, is this something that you would be interested in having as part of your health care? Why or why not?

Key Findings:

Providing People with Individualized Person and Family Centered Care is challenging in a group setting. It can be difficult to meet people’s personal preferences and wishes as well as the needs of the group and the organization.

  • “My biggest challenge seems to be ensuring client/family centred care.  I am seeing some positives for which I am thankful, but I find administration/rules and regulations can really interfere with doing the right thing.”
  • “So far to the great extent, it has been institutional centered care. I am beginning to see some progress – but it takes a lot of perseverance and work which is very tiring.”
  • “In my dad’s case person centered care is the only thing that works. He is still very strong willed and it is his way or the highway. His staff has realized this over time – but it should have happened more quickly. (It wasn’t a philosophy of care they followed – more actually what “worked” for everyone.)”
  • “I am advocating for a change I have a variety of concerns including safety – but rules are rules and if you do it for one you have to do it for all. I understand that to a point – but where is the person centered individual care in that?”
  • “Care is often more focused on the health care provider from what I have experienced in the dining room at our LTC. WE all know that it is important to keep things as much the same routine as possible for someone living with dementia. My mom has been moved to different tables. I was told this is to facilitate anyone regarding assistance with eating and it is easier if residents who require assistance are grouped together. Of course since residents change on a regular basis, there is always change happening in the dining room – which has been very hard on my mom. I understand the reason behind it, but the focus is on being efficient, not on people’s friendship and wishes to sit with the people whose company they enjoy.”
  • “Our residence underwent a much needed renovation. New wings were built but in doing so, residents who were friends were split up and sent to different wings and different dining wings. It was really sad to see. They joined together for activities but only after they realized the new activity rooms in the wings were not working. People missed each other. It wasn’t planned with those relationships in mind – this is their home and their neighbours.”
  • “I find although our home is really working on this, it struggles when offering personalized one on one activities for people in more advanced stages – based on their interests and capabilities. Every person needs a sense of purpose.”
  •  “The dining room is consistent for my father, but there is the inconsistency of trying to feed him and letting him feed himself. He was trained to eat slowly and savour his food. Hid is sometimes hurried and even fed by some of the part-time staff who don’t know him and think they can get him to go faster.”
  • “People need meaning in their lives. Since we know them so well, I feel it is often up to us as caregivers to prod for this to happen on their behalf. We have a long way to go in increasing the understanding that most of the time, we are the voice for our loved ones and need to be carefully listened to with regard.”
  • “Not following the care plan is not practicing person and family centred care – particularly around toileting and nap times – this is a pretty regular occurrence.”
  • “I know rules are made to keep people safe and things consistent but it becomes a problem when the rules and regulations are the key focus. When you see issues with a regulation that isn’t working there is nowhere to take that concern. This applies everyone. The staff have to deal with this issue too – carrying out regulations they don’t believe in.”
  • “Another issue is everyone seems to interpret and even manipulate those rules in ways that aren’t in the best interest of the person and their care.”

Changes in Ideology and Practice are beginning to take place leading to positive changes:

  • The positive I see is there is more regard for the individuals in the dining room eg. Designated seats at tables and slightly more offers of meal choices.”
  • “I see the culture changing. I’m hearing more talk about the person’s choice and personal history – such as not getting the residents up for breakfast and trying to follow their schedules where possible.”
  • “I was able to practice involving my Mom today – folding the babies’ laundry. She made neat little piles and kept smelling the clothes the way she did when we were little. It brought back so many memories.”
  •  “I have recently been asked to put my name forward to be a lived experience facilitator where my family member lives.”
  • “Our home has tried to give purpose to my mom – having her fold towels, bake, do “paper work/accounting” work.”
  • “I am pleased to see that every LHIN has a Patient and Family Advisory Committee and that they will be actively involved in planning and evaluating care in our region. This is a good start.”
  • “I heard today that the Residents’ Council at our home has input into the menu and have managed to even get rid of certain meals. I hadn’t realized they were involved in that way but was happy to hear there are.”
  • “Minutes from our residents’ council are posted on a board at our residence and I also get sent the minutes because of being on the family council email list. You can see a real trend to trying to share information. I think that is great.”

 

 

 

 

 

 

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