Caring for caregivers, the Alberta way!
Rare Disease Day 2021
February 28 is Rare Disease Day, an important day for promoting awareness about the complexity and diversity of rare diseases. Individually, rare diseases do not affect many, but collectively they can impact a very large segment of our population, often much larger than people realize. As a consequence, any awareness about this topic is important to shift thinking towards a greater understanding and appreciation of the genetic variation that is possible within people, and the many different consequences. We are all individually unique (unless you are an identical twin, or you are reading this from the distant future where human cloning is possible and accepted) yet we all have a great genetic variation of nature’s expression. Since the advent of rapid DNA sequencing, we are finally able to start grasping this variation, its consequences, and the value that each person’s genetics holds in a quest to learn what exactly makes each one of us so special and unique.
The Rare Disease Day website creates beautiful promotional videos each year to commemorate this special day:
The way Merogenomics wanted to celebrate this occasion was to provide new content on Caregivers, the unspoken heroes who take care of individuals in need, as we have previously produced an article on the Caregivers of patients with rare diseases. This year we decided to focus on an organization that is close to home, Caregivers Alberta, and their specific mandate to help the well-being of caregivers. The birth of the organization is a part-sad and part-beautiful story. Sad in that, it was started by one caregiver who like so many of their kind, was burnt out from the enormous level of responsibility that most caregivers have to deal with on a daily basis. Beautiful in that, the determination and vision of one individual led to an amazing organization that exists to understand, encourage and ameliorate the stressful burdens of current caregivers in Alberta. Dr. Mikolaj Raszek of Merogenomics spoke to the director of programs and services at Caregivers Alberta, Johnna Lowther to learn more about the organization and what it can offer caregivers.
Caregivers Alberta origins
“This is our 20th year anniversary so Caregivers Alberta as a non-profit organization has been in existence for 20 years as of this year. It was founded by a woman who was a family caregiver and recognizing after having conversations with other people in her circles at that time, that there's lots of supports set up through the healthcare system, community-based service supports and other non-profits designed to support people with disabilities, with health challenges and with aging-related needs, but very little support services for the family or informal caregiver of those individuals. And because of that Diana founded Caregivers Alberta, recognizing that she herself was experiencing burnout as a family caregiver and that there was nowhere, she could turn to, and that there was no support focused on her health and well-being in her role as a family caregiver.
“Most people do not self-identify as caregivers. That is a challenge. We can’t recognize being a caregiver as we feel that this is just my job as a mother, that this is just my job as a wife or a partner, or my job as a family member, as a sibling. I just have to take care of my loved one who has a disability or is having aging-related needs or has some sort of health challenge due to an accident or something, and now they are paralyzed and can no longer work. A lot of family members think that this is just part of their familial responsibilities and duty. And while that can be true for us ethically or morally in our minds, it does not change the fact that it puts an extra job on us as a human being, takes time and energy to provide that additional level of care – a lot of times physical care – to help that person continue living as independently as possible. To improve and maintain their quality of life. That is why our organization was founded.”
Programs and services of Caregivers Alberta
“The easiest way to describe it to people who are completely unfamiliar to us, or the concept of what we are trying to do, we are really there to be the listening ear and the person you can call up and say ‘I am overwhelmed, I am trying to help my loved one, I feel like I am accessing all the services I can access through healthcare, through other support angles and it is not enough. I do not know what to do. We are there to first and foremost just be that empathetic presence to hold space and to say it's okay. The second piece is to say that you are not alone because there are other family caregivers, there are other friends, there are other neighbors in this role as well. You are not the only one who feels this way.
“The staff knows what it is like to be in that role of a caregiver, so it is not just being compassionate or sympathetic, the empathy is real because we know what it is like.
“That is really why we exist, and so the types of programs and services we offer are readily available to you and vast. You can call our caregiver support line via phone, you can email us, we also have a little chat box on our website where you can live-chat with a staff member. If you are having a rough day or maybe you actually have a specific question and you are looking for a resource, or a particular service provider that you think could meet the needs for your care recipient or for yourself, maybe you call and say 'I am burnt out and I need some help, I need to talk to somebody else who has been through this.
“We say, okay – let’s find some resources, services, and peer support groups in your area to join.
“One of our programs is a Peer Support Community and we offer those three different times a week.
“We offer a program called Caregiver Coaching. You can get an appointment with one of our caregiver coaches and it is a one-on-one conversation. Our coaches are trained and skilled in helping you identify what your needs are, what your challenges are, and then what can you do. They are trained to empower you to take action and help you find steps to implement that action. We are not counselors, we are not therapists, we are not psychologists, but our coaches are trained to help the caregiver uncover the root issue and what the need is, and look at action steps they can take to improve their own health and well-being in the challenges they are experiencing as a caregiver.
“We offer what we label as our Education Session Programs where we host guest speakers on a variety of topics. All of our programs and services are virtual right now but pre-COVID we did offer these services in person as well. For example, two weeks ago we hosted a critical care physician, Dr. Daren Heyland, creator of www.planwellguide.ca who came in and spoke to our clients around planning for critical illness, not end of life care planning, not planning for death, but actually what happens if critical illness strikes your family, what if it strikes you as a caregiver, and what does that do to your care recipient.
“On the flip side of that, completely different type of education sessions we offered several weeks ago, a class on breath work. The breath work facilitator came in and did a breath work workshop so that our clients could learn a new technique for managing and hopefully reducing some of the stress and anxiety that they experience in their role.
“We offer a program called Compass For The Caregiver which is one of our longest running programs of the organization. It has been running 13 years now. It has a curriculum attached to it, so it is a four-module series workshop style program, and that is actually the only program we have that has a registration fee attached to it. All of our other services are completely free of charge. That program is delivered cohort style to maximum of 12 individuals. They talk about managing stress, what does that role of being a caregiver look like for you, what does it do to your own sense of self, your own sense of identity, how does it impact you as a human being, managing stress, how do we balance our relationships as a caregiver not only with care recipients but also with the rest of our family members, with our friends.
“Most caregivers actually report that the role of caregiving draws them closer to the person that they are providing care for, it is a positive relationship. But it can also be challenging because there are roles that change within that relationship, and it also can decrease the amount of time that the individual has to spend and nurture other relationships in their life. So the Compass Program talks about how do we balance those other relationships, how do we improve our communication skills with Healthcare professionals and physicians and practitioners that are involved in our care recipients care to really create that holistic interdisciplinary team around our care recipient that we are a part of as a caregiver.
“Then we talk about planning for the journey ahead. Many caregivers are caring for people with progressive diagnosis that may or may not be terminal but often worsen to some degree, and so we talk about planning for the journey ahead. What does that look like when things change and how do you prepare yourself for that emotionally? How do you prepare your family and your environment for that as well?
“We also do collaborative programs with other agencies and the example I will share is with another non-profit called Elder Care Edmonton. They are an organization that provides day program services in the community to often individuals living with dementia. What that looked like pre-COVID was that there were day programs running at community centers, at schools, the churches, at various locations throughout the city where participants would come and be there from 8:30 to 3:30 and participate in a daily recreational program for social engagement, for emotional stimulation, for physical exercise, the opportunity to socialize and engage, and really bring some therapeutic recreation to daily living. And it is a form of respite for the caregiver because the care recipient is able to go somewhere and engage with other people and [caregivers] are able to step away and do other things that they need to do for their own life.
“When COVID hit, suddenly those programs were immediately shut down but you have all these care recipients who were used to utilizing that program. We quickly helped them pivot to offer that program in a virtual setting. We partnered with them to offer a virtual day program. Of course it is not the same, it is not offering the same degree of stimulation because you are not in person, but as we all have learned, you can still engage socially, you can still be stimulated virtually and still participate in programs through the internet. We helped to pivot their programs, and with their recreational therapist, to offer a variety of different types of activities and that is now increased to two times a week.”
Assistance with daily living chores
“We do not offer the physical assistance to caregivers in a home setting to assist with chores and that sort of thing. “There is that program in existence in the healthcare system, in the form of Home Care services to the care recipient – the person who needs the assistance. And because that program is available, then it does alleviate some of those caregiving tasks that the family caregiver may have been doing. For instance, Home Care goes and can help with what is called activities of daily living which helps people bathe, get dressed, do certain things around their own personal care. And then Home Care also goes in and provides what is labeled as respite services which is they have staff that go in simply to spend time with the person who needs the care so that the caregiver can leave the house. So there are systems and programs in place in order to essentially help the caregiver do some of those chores and some of those tasks that are associated with the role of being a caregiver.
“What we are here for is emotional support assistance, peer support, and assistance in an education-based realm. We are here to remind them of how important it is to look after their own health and well-being because so often caregivers do not take the time to do that and then their health and well-being deteriorates to a point that they can no longer take care of their care recipient.”
Financial assistance for caregivers
“There are very little benefits for unpaid family caregivers. That is why we exist as an organization because there is very little setup within Alberta or the healthcare system that provides financial supports to the caregiver. But there are financial supports in place through government and through health care to the person who needs the assistance, the care-recipient. There are financial avenues of assistance for the person who has the disability, who is having the aging-related needs or challenges because there are lots of programs for seniors put in place. There are programs through the CRA for tax credits because of certain medical equipment that you purchase or things like that, that you can claim on your taxes, which is a form of financial assistance. That is how caregivers access the financial assistance. There are very little programs in place specifically for the caregiver.”
Resources for those assisting caregivers
“We consider those additional family members who are impacted by someone in their home needing care assistance, they are caregivers too. Organizations like us exist as a support mechanism, and other community based-like support services. Alberta Supports Program is a part of the government-funded support program where people can call a toll-free number, explain the situation they are dealing with and see what types of services they are eligible for to help their family, if their family is caregiving for someone. That might be around the children, it might be around the partner, it might be around the siblings.
“If it is disease specific, there are agencies such as Parkinson's or MS Society or Autism Canada, agencies like that that specialize around certain diseases that have support programs and support services for families as well and the people who are indirectly affected by caregiving.”
Help with clinical trials for rare diseases
“We do not do much of that. We have a lot of third-party stakeholder relationships with researchers, like with the University of Alberta specially since we're in Edmonton, and then of course the University Calgary and other academic institutions who reach out saying 'hey we're researching this topic area related to caregivers can you let your client base know' and we do that. But we do not do any active recruitment for studies and so therefore we do not have a listing of what those studies are on our website.”
Closing knowledge gap with healthcare professionals around rare diseases
“Our education services do not center around disease. Our education services with healthcare professionals center around awareness of caregiver needs, of the family or the friend or the neighbor who's essentially supplementing the healthcare system by providing care to this person, and recognizing that they are juggling a lot. They may be working themself, they may have their own health or comorbidities occurring and they are additionally taking on the role to help care for someone else. Our education and training is around awareness that this individual caregiver also needs attention, also needs to be recognized, also needs to be validated and cared for.
“[According to the Research on Aging Policies and Practice] (RAPP) statistics about the percentage of caregivers in Alberta for instance, there are 1 million caregivers in Alberta. That means the non-paid, non-professional people often are working, are raising children, have their own lives and again, they are taking on this additional role to help someone else live, more so than just like raising children. They are essentially providing care and services that also help [with what] the healthcare system might be providing. It saves the healthcare system itself billions of dollars every year because you have family members or friends or neighbors or other people who are willing to enter the home or enter the living space of someone needing an assistance and offer that assistant for free.”
Personal source of pride for involvement with caregivers
“I observe clients who come to us feeling very helpless and hopeless and after they receive some of our services, or go through some of our programs, they definitely do not have that helpless, hopeless feeling, behavior or responses that we are seeing or hearing. That just tells me that an outcome that I witness is that we are helping clients build emotional resiliency essentially.
“I like that our team, our organization was founded by caregivers and it is essentially still ran by family caregivers, so we know what it is like and that is something I am proud of. Because if I reach out for support around a topic of my life, I like to know that whoever is helping me actually has the lived experience and understanding, and has an educational component that just nothing else can suffice for and so I'm proud of that.
“I am proud of the fact that, everyone says this, we are truly very inclusive, and it does not matter who you are or what challenge you are experiencing, you can call and rely on us if you are feeling overwhelmed in your role as a caregiver and we will listen. We will just listen, and we will help you discover – are there other resources, other services, and other programs that we can connect you to, to help make your life feel a little easier. That you do not need to feel so overwhelmed in this role. A lot of the caregiving role leads to emotional burnout and so it is working with clients on just increasing their resiliency and their ability to bounce back from stressful situations and crises. Because stressful situations and crises can happen over and over again in the life of a caregiver. It is learning how to roll with those punches, rebound and maintain your own health and wellness throughout this journey, that is important. As someone who has been through that journey myself and has experience in what it is like to go through burnout and recognize the detriment to my own health and wellness, I recognize how important resiliency really is.
“We say to our clients all the time you cannot give from an empty cup and if you really want to continue loving and caring for this person that you're providing assistance for, you have to take care of yourself first, and it is not selfish. It is not being selfish. That is the only way that you can provide the best care as possible.”
This article has been produced by Merogenomics Inc. and edited by Jason Chouinard, B.Sc. Reproduction and reuse of any portion of this content requires Merogenomics Inc. permission and source acknowledgment. It is your responsibility to obtain additional permissions from the third party owners that might be cited by Merogenomics Inc. Merogenomics Inc. disclaims any responsibility for any use you make of content owned by third parties without their permission.
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