Caregiver burden and understanding dementia care

Caregiver burden and understanding dementia care

Research into dementia care and caregiver burden are extremely important topics for the future health of Canadians, especially since the statistics from the Alzheimer Society Canada show that by 2031 the number of people in Canada living with Alzheimer’s and other forms of dementias will hit 1.4 million people.

This will directly impact the family and friends who will need to take on the role of dementia caregivers in order to support the person in their care.

The work researchers are doing now into understanding the care needs of people with dementia, and looking at how caring for someone with dementia affects the family caregiver will benefit not only future dementia caregivers but also people living with dementia.

I believe that there is still a fair amount of stigma attached to this condition. Dementia is often perceived as an older person’s problem and ageism is a real issue in our society.

Dr. Emma Bartfay, Associate Professor, Faculty of Health Sciences at the University of Ontario Institute of Technology (UOIT), is a researcher who has dedicated many years of her career to understanding dementia care and caregiver burden.

Dr. Bartfay’s work has earned awards from the Canadian Institutes of Health Research, the Canadian Health Services Research Foundation, the Natural Sciences and Engineering Research Council of Canada, and National Cancer Institute of Canada. For a more detailed biography of Dr. Bartfay’s credentials see UOIT’s Expert Centre page.

Through the Q & A below, Dr. Bartfay shares some thoughts on what she’s discovered through her research on dementia care and caregiver burden.

Q:       Why do you think it’s important, especially now, to focus your research on dementia care?

Dr. Bartfay: I think it is immensely important that we conduct research on dementia care, not only now but also for the future to come.  An obvious answer is that there is still no cure for the condition.  As these individuals and their family live with dementia, our hope in dementia care research really is about helping them live the best lives that they can under the circumstances.  In short, until we find dementia cure, the best that we can do now is dementia care.

I am passionate about dementia care because I feel that geriatric care in general is just not seen as a priority as it should be.  Furthermore, the number of individuals living with dementia is expected to climb.  According to the Alzheimer’s Disease International (ADI), there could be over 130 million affected individuals worldwide by 2050.  In Canada alone, we could see as many as 1.4 million individuals living with dementia in the next 15 years.  This is a problem that is not going away. 

Q:       What aspects of dementia care are you currently studying?

Dr. Bartfay: I have just concluded a series of studies where I examined the issues of missed and delayed dementia diagnoses among residential care facility residents and home care service recipients.  In these studies, I concluded that both missing and delay diagnosis were significant problems among residential care facility residents.

Two of my current graduate students are also conducting research on dementia care.  One student is examining injuries among persons with dementia (PWD) in relationship to alcohol use.  The second student is looking into the possible benefits of physical activities on sleep among PWD.

Currently, I am embarking on a new research initiative that investigates the issue of psychiatric comorbidities (two chronic diseases or conditions simultaneously present in a patient) among PWD and how these individuals utilize health services.  Evidence suggests that psychiatric comorbidities are quite common in this population but are often unrecognized. In this study, I am specifically interested in knowing the extent of this problem, the needs of these individuals and where the service gaps may be.

Q:       What do you think isn’t working in the way people with dementia are cared for currently?

Dr. Bartfay:  As I mentioned above, I think that geriatric care is just not seen as a priority as it should be.  Secondly, I believe that there is still a fair amount of stigma attached to this condition. Dementia is often perceived as an older person’s problem and ageism is a real issue in our society.   Thirdly, navigating the health care system in this country, especially when you are trying to get access to different services (health, community, social, etc.) can be quite confusing and frustrating.

Q:       Where do you see changes in the way we care for people with dementia in the future?

Dr. Bartfay:  The health care systems around the world, including Canada, have been and will continue to shift from institutional-style to community and home-based care.  With this approach, individuals can remain at home for as long as they wish.  It is well known that older individuals prefer this way than to be admitted to an institution.  In my own research, I found that PWD who received home care services while living at home actually fared better than those who lived in residential care facilities. The downside, however, is that the burden of caring for PWD will fall on family members more than ever before.  Furthermore, the benefits are highly dependent on the support that a caregiver receives.          

Q:       How important are caregivers to those living with dementia?

Dr. Bartfay: They are extremely important.  As I mentioned above, if an individual with dementia remains at home, a family member often serves as the primary caregiver.  As the condition deteriorates, the individual with dementia will increasingly be more and more dependent until they are totally reliant on the caregiver on every aspect of life, including all personal care matters, mobility, transportation, communication, medical appointments, medications, and of course emotional support, and countless other tasks.

Q:       What’s the most difficult part for caregivers providing care for someone with dementia?

Dr. Bartfay: This is a difficult question to answer, as everyone is different.  Caring for someone with dementia is challenging to say the least.  It is both physically demanding and emotionally draining.  The caregivers often feel overwhelmed, alone and helpless.  This is where community-based services can play a positive role.  My research suggests caregivers who attended support groups enjoyed good quality of life. However, I believe that watching a loved one slowly losing the ability to live as an independent individual is heartbreaking.

Furthermore, family caregivers of an individual with dementia are often older individuals themselves, such as the spouse who also has his/her own health issues.  When caregiving becomes a ‘full-time job,’ the caregiver may also face financial difficulties. 

Q:       How would you describe caregiver burden?

Dr. Bartfay:  Caregiver burden can be referred to as the tension (e.g., stress, anxiety, fatigue, the feeling of helplessness and hopelessness) that is induced by a sustained caring for another individual with a chronic health condition over a long period of time. Evidence suggests that caregiver burden is often overlooked by professional health care providers. 

Q:       What happens when caregivers experience caregiver burden?

Dr. Bartfay: When this happens, the caregivers may experience a number of physical and emotional symptoms.  Physically, the caregivers are often exhausted.  They may also have trouble sleeping, trouble concentrating, be more susceptible to negative health issues (e.g., gastrointestinal problems and flu).  Research shows that caregivers often neglect their own health while caring for their loved-one and this certainly has a negative impact on their own physical health.  For example, caregivers had been reported to have increased risk of heart disease, hypertension and diabetes. 

Mental health and well-being are compromised when caregivers experience caregiver burden.  Caregivers are often emotionally drained.  High levels of stress, irritability, anxiety, depression and various other emotional issues are all very common. In fact, research shows that a high proportion of caregivers met the diagnostic criteria for major depression.  There have also been reports of increased risk of substance abuse by caregivers.

In addition, caregivers may develop resentment toward the person they are caring for, and this certainly puts an added strain on the situation.

Q:       How do you think caregiver burden can be relieved?

Dr. Bartfay: There are certainly many ways that caregiver burden can be relieved.  Of course, it depends on the individuals.  Different people have different coping mechanisms.  Examples may include readily available community supports, easily accessible resources and better integrated health services that are easily navigated.  My previous research suggests that community services such as adult day programs for PWD and support groups for caregivers can increase the quality-of-life of caregivers.

For more information about caring for someone with dementia, check out our Elizz article on providing dementia care at home. For personalized help, a session with the Elizz Caregiver Coach can help you navigate your role as a caregiver.




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