We are losing Megan, whose last day as a placement student is today! She is on to bigger and better things - like graduating from Carleton University. On her way out the door, she gave us permission to publish her final assignment: The Importance of Supporting Caregivers of People With Dementia.
Importance of Supporting the Caregivers of People with Dementia
July 21st, 2019
In Canada today there are more than half a million people diagnosed with Dementia. It is estimated that by 2031 the number of cases will rise by 66%. Dementia is a term which encompasses many terminal progressive neurodegenerative diseases. People with Dementia face a variety of symptoms, such as decline in memory, changes in behaviour, and eventually the inability to perform the activities of daily living (Takai, Takahashi, Iwamitsu, Ando, Okazaki, Nakajima, . . . Miyaoka, 2008;2009;). Unfortunately, Dementia is not a one-size-fits-all disease (Martinez Guerra, 2017). The rate of progression, age of onset, severity and symptoms vary between cases and diagnoses; this presents a substantial challenge not only for the person with Dementia but also their caregiver (Takai et al., 2008;2009;) (Martinez Guerra, 2017).
Caregivers for people with Dementia encounter challenges in taking on the many roles required of them, and often must manage the long-term symptoms of Dementia without education or emotional support from others (Takai et al., 2008;2009;) (Salfi, Ploeg, & Black, 2005). As a result, caregivers face additional stress and healthcare challenges. These include higher risks of emotional exhaustion, burnout, social isolation, depression and high blood pressure (Takahashi et al., 2006) (Takai et al., 2008;2009;).
Every hour in Canada nine more people are diagnosed with Dementia. As the rates of Dementia climb so does the need to support caregivers (DSORC, 2018). This paper seeks to examine: the challenges caregivers of Dementia face, the impact The Dementia Society of Ottawa and Renfrew County has made in their role of supporting caregivers, and what gaps are preventing caregivers from receiving the support they need. By applying social work theories, intersectional lenses, scholarly literature and examining my experience in field placement with The Dementia Society of Ottawa and Renfrew County; this paper critically reflects on the importance of supporting the caregiver of a person with Dementia. By supporting caregivers, we can help improve the wellbeing and quality of life of not only the caregiver but also the person with Dementia (Takai et al., 2008;2009;) (Molnar, & Frank, 2018).
As we age, we face many challenges, and although onset occurs most commonly after the age of 65, Dementia is not a form of normal aging. Dementia is a progressive terminal disease in which the brain deteriorates causing a decline in cognitive abilities (Takai et al., 2008;2009;). The term Dementia encompasses many different diagnoses including Alzheimer’s Disease, Vascular Dementia, Frontotemporal Dementia, Dementia with Lewy Bodies, Creutzfeldt-Jakob Disease, Wernicke-Korsakoff Syndrome, Mixed Dementia and more (DSORC, 2018).
Dementia is a complex disease in which each person experiences a unique set of challenges. A person with Dementia may exhibit a spectrum of symptoms which shift throughout the progression. The different diagnoses of Dementia are linked to different parts of the brain deteriorating, which contributes to the spectrum of symptoms. Although two people may both be diagnosed with the same form of Dementia that does not mean they will experience the same symptoms or challenges (Martinez Guerra, 2017).
Symptoms can include but are not limited to: disturbances in behavior, changes to personality, late day restlessness, irritability, disorientation, impaired judgment, and eventually the inability to perform the tasks of daily living (Chu, Yang, Liao, Chang, Chen, Lin, & Chou, 2011). Dementia in some cases can bring with it aggression, disinhibition, outbursts and responsive behaviours all of which are very difficult challenges and take a toll on the caregiver’s wellbeing (DSORC, 2018).
With the symptoms caused by Dementia, other health challenges follow; people with Dementia can develop pneumonia, dehydration, malnutrition, bedsores, infections, depression and many other complications which can be life-threatening (LeMone, & Burke, 2004) (Chu et al., 2011). Caregivers face a multitude of issues and challenges in their journey caring for a person with Dementia due to the nature of the disease.
Caring for people with Dementia has always been a challenge due to the complexity of the disease, but as the population of older adults with Dementia rises, so does the burden for caregivers. According to the Canadian Institute for Health Information (CIHI, 2018), compared to caregivers of older adults without Dementia, those caring for people with Dementia put in longer hours and experience higher levels of burnout; resulting in additional stress and other health challenges (Schulz & Sherwood, 2008) (CIHI, 2018). The burden of care caregiver’s face has been described as a major healthcare issue, which requires attention and needs to be addressed (Truzzi, Valente, Ulstein, Engelhardt, Laks, & Engedal, 2012).
As with any other disease there are assumptions, stereotypes, discrimination, and stigma associated with Dementia. People with Dementia may not seek a diagnosis due to stigma and fear of losing their independence (Swaffer, 2014). When diagnosed, often the person with Dementia does not want to disclose their diagnosis with others due to this stigma, resulting in a caregiver providing care alone (Weisman de Mamani, Weintraub, Maura, Martinez de Andino, & Brown, 2018). The stigma associated with Dementia is perpetuated through society as people make jokes that if you are older and forget something then you must have Dementia, when some memory lapses can be a part of normal aging (Swaffer, 2014). Additionally, caregivers also face a stigma, as those who experience negative feelings such as guilt or grief often don’t reach out although those feelings are common for those caring for a person with Dementia. (Chu et al., 2011) (Weisman de Mamani, et al, 2018).
Another factor which contributes to caregiver burnout is the shift in roles, from loved one to caregiver. Caregivers for people with Dementia are often a spouse, a child, a sibling, another family member or a friend; with each relation bringing its own unique challenges. Those who take on the role of caregiver could be in the role for up to 20 years after a person is diagnosed; with increasing caregiving demands and burden (Karlin et al., 1999) (Takai et al., 2008;2009;). Caregivers who share an emotional or familial relationship face the most difficulty with the change in roles and the challenges associated with Dementia care (Truzzi et al, 2012). This could be because the person they love or know is changing, and they may have depended on the person with Dementia before. For example, a woman has been diagnosed and she has cooked for her husband for the last 50 years, and now he must take on that role because she is no longer able to follow a recipe. Another example, an adult child of a person with Dementia has always gone to their mother for relationship advice. She is now going through a divorce but her mother is non-verbal, and she misses her mom. With the reversal of roles and shift in family dynamics caregivers face challenges. Seeing the person they are caregiving for deteriorating and changing has a significant impact on their well-being; as it can come with feelings of loss, grief, sadness, guilt, anger, depression and other negative emotions (Swaffer, 2014).
Caregivers take on the role for different reasons: some may choose to care for the person with Dementia, some are the only option, and some may feel it is their obligation due to marriage, religion or because their parents looked after them as a child, and there are many other reasons (DSORC, 2018). Despite the many reasons, most caregivers do not reach out for help as they do not want to pass on any burden to others. This leads to caregivers providing care without supports. Caregivers are at the forefront of the disease and unfortunately directly face the brunt of the daily changes, uncertainty, frustrations and challenges the disease can pose in many forms physically, psychosocially, and financially (Takai et al., 2008;2009;).
The role of a Caregiver will fluctuate throughout their journey based on the needs of the person with Dementia (Martinez Guerra, 2017). During the progression the dependency of the person with Dementia will increase, requiring more time, money and energy from the caregiver (DSORC, 2018). Caregivers often experience increased levels of burden as they cope with the many different roles required of them. The responsibilities of a caregiver start off gradually, but as time progresses, they will increase, eventually escalating to 24 hours a day, 7 days a week (DSORC, 2018). Nearing the middle/end stages of the progression caregivers may have taken on the roll of: an advocate, a nurse, a cook, a cleaner, a support worker, a banker, a personal assistant, a driver, a counselor, a defender, a hair stylist, a comforter and many more. Caregivers take on all the duties which the person with Dementia can no longer perform for themselves: In addition to the responsibilities caregivers have in their own life; which can be overwhelming (Martinez Guerra, 2017).
If a caregiver is experiencing their own challenges and/or health issues this escalates the burden of care they face, it is important that caregivers be conscious of their own needs and receive supports; to ensure they are able to take care of both themselves and the person for whom they are caring. A caregiver may be caring for the person for up to 20 years; self-care is an important aspect for which many caregivers no longer have time (Martinez Guerra, 2017).
Caregiving for a person with Dementia is not only emotionally straining but also financially straining. It is estimated by CIHI (2018), that in 2016 alone caregivers spent $1.4 billion dollars out of pocket. For caregivers of people with younger onset Dementia it is very difficult, as the disease progresses, to continue working full-time and balancing the needs of the person with Dementia (Martinez Guerra, 2017). This results in limited income, and as a person’s Dementia progresses so too do the associated expenses. Whether you are retired, receiving a pension, or still working there is a financial burden many caregivers face (Kimura, Tamoto, Kanzaki, & Shinchi, 2011). Some caregivers are unaware of or choose not to reach out to services which help provide subsidized: care, respite programs, day programs or options for long term care facilities. Additionally, these services and government supports do not cover everything, a majority of caregivers are forced to pay out of pocket for: home modification for accessibility, relief staff to allow a caregiver time to do something for themselves, prescriptions, travel accommodations, rehabilitation services and more; which causes financial stress for caregivers (CIHI, 2018). Some caregivers often must prioritize if they can afford assistance or if they must take on the roll themselves, increasing caregiver burden (Kimura, Tamoto, Kanzaki, & Shinchi, 2011).
Toward the end of the disease a person may be providing care 24 hours a day, every day, which poses not only financial costs but also social costs (Beerman, 2003). The more a person is providing care the less time they have for the things they enjoy and for social activities. When the person with Dementia enters the stage of constant supervision, it’s for a variety of reasons, safety being one of the most common. Caregivers are often on edge at night in this stage, listening to hear the door of the person with Dementia, worried they may wander out or fall. The concern for the safety of the person with Dementia can be overwhelming and cause a caregiver a great deal of stress. Caregivers are worried to leave the person alone for even a few minutes. This can have serious impacts on the well being of a caregiver as they may become more isolated, making them more vulnerable to health complication themselves (Chu et al., 2011). It is important for caregivers to receive support in all aspects of care, to help reduce the caregiver burden (Kimura, Tamoto, Kanzaki, & Shinchi, 2011).
By supporting caregivers, we can help improve the well-being of not only the caregiver but also the person with Dementia (Takai et al., 2008;2009;). Unfortunately, there are not many services which act to support caregivers of people with Dementia. The services and resources which do exist are not being utilized to their full potential. This is partly because not all caregivers seek supports, and some are unaware of the services which do exist. There are many reasons for this such as: a lack of professional referrals to support services, caregivers who are too overwhelmed to reach out, caregivers who do not have time or opportunities to receive support, or due to stigma (Swaffer, 2014). Some caregivers do not reach out until they are at a breaking point.
It is important that caregivers access and receive support from the start of their journey caring for a person with Dementia: to help support caregivers, reduce caregiver burnout, assist in managing the challenges caregivers face and, in the process, help the person with Dementia.
If caregivers are burned out from their caregiving role, they are more likely to react, become upset, and provide lower quality of care (Takai et al., 2008;2009;). More caregivers need support, but due to the many reasons causing caregivers to not reach out, they may never get that support unless change is made on a structural level. It is important for Social Workers and organizations like The Dementia Society of Ottawa and Renfrew County to continue to support caregivers and advocate for real change.
The Dementia Society of Ottawa and Renfrew County
The Dementia Society of Ottawa and Renfrew County (DSORC, 2018) is one organization which provides a leading example in Dementia Care, one that focuses its support on the caregiver. They believe that through the help and guidance they offer to caregivers, the caregiver can then better support their loved one with Dementia. DSORCoffers a variety of services and programs, to people in the Ottawa and Renfrew County areas, focusing on socialization, education, support groups, tele-support, guidance navigating the health care system, and one-on-one counselling. They do this with a mission to ensure no one faces Dementia alone (DSORC, 2018).
DSORC utilizes a client-centered and strengths-based approach, looking at the strengths of the person with Dementia so caregivers can focus on what the person can still do rather than focusing on what they have lost (Molnar, & Frank, 2018)(Fazio, Pace, Flinner, & Kallmyer, 2018). As well, a key concept they teach in all education programs is to connect with what the person with Dementia is saying, be with them in the time and place they think they are in and not correct them as that would lead only to reactive behaviours. DSORC teaches caregivers many techniques, approaches and ways to make changes to ease the caregiving burden (O'Brien, Goldberg, Pilnick, Beeke, Schneider, Sartain, . . .Harwood, 2018).
People with Dementia cannot change what they are going through, there is no cure or way to slow the progression; DSORC teaches caregivers what they can do in their role. By educating caregivers on what Dementia is, the different forms of Dementia, how it affects the brain, what changes in behaviours will occur, ways to support a person with Dementia, what to expect, how to maintain a relationship, what to expect when looking at long term care options, when a move is necessary, and other very important topics. In their education sessions caregivers come away with strategies which assist them in reducing their burnout and frustration, understanding it’s not the person but it is the Dementia, connecting not correcting, and easing or preventing some of the challenges they face. The education programs help alleviate some of the stigma as they assist in normalizing the feelings and experiences. DSORC can help answer the many questions caregivers have during their journey, and provide the information allowing them to better understand the scope of the disease and to plan for the future (O'Brien et al,2018).
DSORC also provides social programs for people with Dementia and their caregivers, such as: Lunch Bunch, Motiview, Let’s Get Moving, Art Program, Turquoise, and other musical or seasonal programs. Lunch Bunch is a group that goes out for lunch at a local restaurant, allowing them to socialize with others who understand what they are going through. Motiview is a cycling program which uses technology to display biking paths from around the world which involve physical activity and reminiscing with others. Let’s Get Moving is a physical exercise program to allow physical activity, socialization and strengthening. The Art Program is a visual arts program to encourage socialization and expression. Turquoise is one of the many music programs offered. With so many social programs DSORC encourages caregivers and people with Dementia to be social, engage with others, exercise, reminisce, express themselves and so much more. This assists in reducing the isolation of caregivers and provides an avenue for them to connect (Beerman, 2003). All of this is important in supporting caregivers and reducing burnout.
Another program which DSORC provides is co-facilitated support groups for caregivers with more than 6 locations across the city, an online support group, a support group for under-65 younger onset
, and support groups in English, French and Arabic. The support groups combine diverse forms of intervention to provide venues for collectivisation, peer support, emotional support, and a place to share (Chu et al., 2011). A support group often provides caregivers with a safe venue to discuss their feelings, techniques, concerns, frustrations; and to receive advice and validation (Beerman, 2003). Support groups have many beneficial impacts for caregivers: they allow them to connect with others, share experiences, make connections and find an array of supports. This reduces the negative feelings many caregivers experience by reminding them they are not alone. Support groups also provide some respite time for caregivers, some time away from the person they are caring for and time for themselves (Beerman, 2003). When attending support groups during my placement I saw the connection between caregivers, the hope and fear they share, the resiliency, and the positive impact support groups had for members. Some caregivers left feeling less stressed as they had a venue to vent without judgement, some leave relieved as the questions they had were answered and others shared their techniques to help address challenges others are facing too.
A program with which I was involved the most and saw firsthand the positive impacts it had for many caregivers was one-on-one support. Support was offered in person in the office, at a person’s home, in the community, and on the phone; to ensure it could be accessible to as many as possible. When talking with caregivers for one-on-one support often they are overwhelmed and do not know what to do. When people call you never know what challenges they are facing, and no two calls were ever the same. Dementia Care Coaches reframe and validate caregiver feelings, provide support, and discuss many things with clients. Often they help caregivers navigate the health care system and make referrals to DSORC programs or other agencies which can assist. By helping caregivers navigate the system it helps reduce stress and the overwhelmingness that Googling for answers brings. For example, if a caregiver is looking for assistance planning for long term care, the person is overwhelmed and isn’t comfortable as the decision to move someone into long term care can be quite difficult; a Dementia Care Coach discusses with them the process, options, and their feelings, then follows up by sending them only the most useful and relevant information via email/mail.
People are encouraged to reach out at any and all points of their Dementia journey for support. If a person is struggling to cope, has questions, wants to vent, learn skills, find out what resources are out there, plan for the future, almost anything and everything, the Dementia Care Coaches are there to help. By providing this support in many fashions such as by phone it helps eliminate many barriers, such as transportation, having to get someone to care for the person with Dementia while seeking help; it provides a discreet way, an easy way and a fast way to get assistance and navigation, and it allows caregivers to not add another thing or place to be to their busy schedule (Salfi, Ploeg, & Black, 2005).
In my placement I took on the role of a Dementia Care Coach and interacted with more than 200 caregivers. I became knowledgeable in the services they provide and learned so much about Dementia. I was involved with or shadowed most services/programs they provide. This allowed me to better understand the need for these services, the demand, and the positive impacts support has for caregivers and people with Dementia.
Most of society views Dementia from the medical model perspective and their first priorities are to cure or treat the person with Dementia, but we need to do more. Caregivers of people with Dementia face high rates of burnout and need support. Organizations such as DSORC do their best to provide services to help both people with Dementia and their caregivers, with different mediums to provide services, and 3 different languages; but it’s not enough and there will always be gaps. The biggest limitation caregivers face is stigma, as caregivers often do not reach out to other family members or to resources as they do not want to burden anyone else (Swaffer, 2014) (Truzzi et al, 2012). People are not getting diagnosed or reaching out for help; leaving those caregivers alone and vulnerable to burnout. Other limitations ultimately lead back to intersectionality (Thomas, & Milligan, 2018). Caregivers and people with Dementia, due to their race, religion, culture, language, age, and other socioeconomic factors, face unique challenges to receive care and there are not always services to address them.
In a perfect world all caregivers would receive support, and no one would be burned out, but unfortunately that’s not possible. Despite this, as social workers we can do our part to support those who seek help, and to advocate for change to help reduce or eliminate the stigma. As Canada’s population is increasing, and Canada released their strategic plan for Dementia care increasing funding for supports, it’s important now more than ever for social workers to step up to support caregivers for people with Dementia.
Implications for Social Work
The increased population of people with Dementia will result more people needing support to cope with the challenges of caregiving. Social workers must do their part to help, by providing information, guidance and support for caregivers to help them in their journey (Martinez Guerra, 2017). The work of a Dementia Care Coach is very similar to that of a Social Worker. They both value: interviewing skills, rapport building, strengths based approaches, making referrals, co-leading support groups, assisting in future planning for care, empowering clients, advocating with caregivers, drawing on theory of self-care, and they remain client-centered.
During my time as a Dementia Care Coach I got to apply my social work skills and knowledge in practice. I was able to demonstrate my ability to apply the CASW Code of Ethics (2005) within my field placement setting. By working with my own clients through one–on-one support on the phone and utilizing these social work skills and values, to support my clients and uphold confidentiality. My placement has allowed me understand Dementia and the multitude of issues caregivers face, and the ways in which their socioeconomic status impacts their experiences (Thomas, & Milligan, 2018). As social workers, it is important to be cognizant of the intersectional issues clients’ experience, and to advocate with clients for change. My placement has allowed me to develop new interviewing skills and practice my reframing skills and strengths-based approach in all interactions with clients. As well, I have been able to develop my clinical Social Work skills of keeping case notes and presenting cases in case reviews.
Working as a Dementia Care Coach has allowed me to engage in self-reflection and critical thinking, reflect on weekly interactions and experiences, review professional literature and use research methods to inform my knowledge as a future social worker. It is important to constantly seek opportunities to become knowledgeable about the challenges clients face, and about the services and supports needed in the community. In my placement I was able to examine the issue from a structural view, allowing me to be cognizant of the stigma which acts as a structural barrier in the lives of caregivers.
Until change is made to help reduce the stigma, the challenges caregivers face will remain the same. People will continue to avoid reaching out for help. The Dementia Society taught me the importance of supporting caregivers of people with Dementia and how social workers can help. I never knew before this placement the extent of the burden caregivers faced, and I now know more needs to be done to help support caregivers (Washburn, & Grossman, 2017) (Martinez Guerra, 2017).
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