When I researched the topic of Indigenous seniors with dementia I found some evidence that it is tradition for family members to take care of their seniors at home instead of placing them in a personal care home. According to Cox (2007), the most common traditional practice of North Dakota Indigenous peoples is to take the seniors into their homes and care for them. However, according to a study that was conducted in Manitoba, the Profile of Metis Health Status and Health Care Utilization in Manitoba (2010), it was found that home care use for the Metis is statistically higher than that for all other Winnipeggers. Perhaps this is due to Metis people choosing to take home care over entering into personal care homes.
Personally, I do feel it is good for Indigenous families to care for their own seniors at their homes but I do question the quality of care of Indigenous seniors with dementia are receiving. It is difficult to care for persons with Dementia; it requires 24 hour care and it is mentally and physically exhausting. According to a study conducted by Swatsky & Fowler-Kerry (2003), a group of urban women who cared for seniors and disabled persons described their experience as being a 24 hour a day, 7 days a week job responsibility unless you have respite. Although this study involved the informal caregivers’ experience of long term care of seniors, seniors with dementia may also be included. The article outline that the responsibilities of informal caregivers included: personal physical care special treatments, medication management, physical therapy, laundry, special meals; transportation, advocacy within the health care system, managing communication and memory problems, and dealing with emotional problems (p.279). This extensive list of potential duties may be too much for family member to have to do on a daily basis.
Although Indigenous cultural practices have had an impact in the decision for families to care for seniors with dementia, there are families who choose to place their loved ones in personal care homes. What are the options of personal care homes that are available to them? Where are families sending their seniors with dementia? Currently in Winnipeg there are no Aboriginal care personal homes but there is a need for people who are employed and are trained as caregivers; who are Indigenous, speak their language, and need to be familiar with culture and traditional practices.
In the fall of 2011, there is a 80 bed facility Indigenous Personal Care Home that will be opening (Winnipeg Free Press, 2009 September). This personal care home will be built on the south side of the city near the University of Manitoba. The province will be paying 19 million of the construction cost, and Southeast Resource Development Council will cover the remaining 2 million. According to Brokenhead Ojibway Nation Chief Debbie Chief, a board member of the Southeast Resource Development Council, “Our Elders are afraid to be in a place that may be so unfamiliar to them.” So this development may or may not be a solution for Indigenous that require long term or intensive care, but it is still good to see that families will now have an option.
I am glad that I am doing my practicum at a personal care home practicum, although it is not Indigenous, it does provide senior residents who are Indigenous with the opportunity to practice their cultural and traditional practices such as smudges, sharing circles and it recognizes that culture is important to residents.
Although seniors with dementia may not be able to tell care givers and staff all their needs, creating care homes that recognize indigenous cultural practices and traditions will benefit their quality of life as a resident. According to Orrell et al. (2008), “There is little known about how people with dementia in residential homes view their own needs and whether these views agrees with the views of staff or family caregivers” (p. 942).
By: Arlene
Arlene- I liked your blog. I was thinking about it and I cannot even imagine the struggles that individuals who provide care to an ill family member go through, but I imagine it must be stressful and draining both physically and mentally. In you blog you mentioned that you did not think it was a good idea for indigenous families to care for their own seniors at their homes because of the strain of care giving; I think this is such a valid point. I almost think this concept really could be extended to anyone that provides care 24/7 because I think this is a great stress for anyone and that perhaps they should be relieved of some of their care. In my placement I run into a lot of older adults who themselves are the 24/7 caregiver for a partner and you can see the strain it has on them, and their relationship with their partner. Also, I often wonder myself as well too what kind of care Indigenous individuals would get in personal care as well. Therefore, I agree with you that there definitely needs to be more care homes that recognize indigenous cultural practices and traditions in order to create a better quality of life for older adult Indigneous people. Thanks Meghan
ReplyDeleteArlene,
ReplyDeleteI was pleased to read your blog. Your blog reminded me of a proverb from my homeland that appropriately describes to difficulty of caregiving. I would interpret it here for you. It says that there are no good daughters and sons for a prolonged illness of their parents. This Korean proverb describes how no one can have a warm heart if they are faced with their senior parents’ suffering from a chronic illness for a long time, particularly those whose parents are suffering from dementia, Alzheimer’s disease, and cardio-vascular disease. This expression tells us a care giving is an extremely hard job even if caregivers really love their parents due to the burdens of care. As you point out, the quality of informal care is questionable because even if family caregivers provide care with their warm hearts, no one can guarantee that seniors receive satisfactory care. At the same time, caregivers may not have strategies to manage their emotional, mental, and physical exhaustion. In my placement, a husband reluctantly agreed to send his wife to a personal care home after long-term caregiving at home because he recognized himself he could not get her up when she had a fall. He also found out that because he had too much work to do for his wife, he did not have a chance to treat his emotional or physical exhaustion for himself. As seen in this example, informal care is impossible without personal sacrifice.
Like my home country, which is a collectivistic society, Indigenous seniors may not be familiar with westernized personal care homes. It is good to hear an Indigenous personal care home will be opening near the University of Manitoba in 2011. The Indigenous personal care home would be a better place than for Indigenous seniors with dementia. Nonetheless, I believe that the best way for Indigenous seniors with dementia is to live in their homes and receive appropriate care services. Governments should fund support for informal caregivers who take responsibility to care for their seniors at home. Under this system, both caregivers and seniors with dementia will benefit. Caregivers will earn money from the government, while seniors with dementia receive informal care at home. Moving to a new place is really stressful. Of course, clients should have an opportunity to choose either caring for seniors in the home or using Indigenous personal care homes depending on caregivers’ and families’ decisions, including the opinions of seniors with dementia. By Eunkyeong
This was an excellent post and the comments are very rich, too!
ReplyDeleteI am located in two different cultures. Austrian women are used to being in daily contact with their parents. That's the norm. In Canada, in my social work education, I was taught that this is pathological enmeshment. I wasn't the only student to take strong exception to this expression of values by a male, North American professor drawing on a male theorist.
So now, with aging parents, my sisters and I are having conversations about our values around care and support. It's an interesting conversation. In addition, I have been profoundly influenced by the values of my Indigenous friends in Winnipeg around family. This experience here has helped me to re-calibrate the values of my two cultures of origin. So I find myself validated in the direction of family caregiving values.
But more is at stake, I think, than the caregiver's values. How might I balance my own needs for health and financial security with my desire to care for my parents and with their need to receive the best care. Is family provided care always best? I don't know, but I suspect that it really depends on a lot of variables unique to each situation.
It goes to show how easy it is to bring our unexamined assumptions into our practice. It's a lot more complicated to reflect on our own values and to listen to the stories of each family member involved with the situation.
I am so encouraged to see new social workers like you doing this kind of reflection.
Arlene,
ReplyDeleteI really enjoyed reading your post because it has touched home to me.
I am currently residing with my great uncle who is 76 years old, diagnoses with terminal cancer and has progressive dementia. His cognition is decreasing significantly which makes the job of care giving much more time consuming.
My family and I are becoming more concerned because he has been wandering down our street and becoming lost a few doors down. He has also been doing other odd things such as putting dirty dishes back in the cupboard, asking the same question over and over again, etc.
He has home care come in to help him wash, get dressed and make lunch while his family care givers are at work, however due to his decreasing cognition we believe this once a day is not quite enough. We question whether his care is of best quality residing with us.
We have been thinking about a personal care home or supportive housing but there are many things we fear about making that decision. One, we are not sure if that type of setting would benefit his well being or not. He has always lived with family members due to never being married or having children. He threatens he will die very shortly after if we ever put him in a “home.” He smokes cigarettes which may lead to implications of acceptance to any personal care home or supportive housing unit.
As an Indigenous family who holds traditional beliefs, I believe this new Indigenous Personal Care Home might be the perfect place for him! As you mentioned in your blog about how our elders fear to reside in a place unfamiliar, I completely agree. I feel that this is the case for my great uncle.
Thank you Arlene for the great insight and I plan to share this news with my family so we can explore this option together!
Melissa
Hi Arlene,
ReplyDeleteI really appreciated your insights into the issue of the lack of Indigenous representation in personal care homes. I liked how you addressed the issue that its not that Indigenous peoples with dimentia do not exist, but that they are being cared for else where. Like the old saying goes, "out of sight, out of mind". However, with the aging population and the greater demands on the health care system by this growing population, I highly doubt that this population will be "out of sight" for much longer.
Something that I started thinking about when reading your blog was a previous blog written by Kendall, about the prevalence of Aboriginal grandparents raising their grandchildren. It is statistically known that within Indigenous communities, the average age of Grandparents is younger than in Non-Indigenous communities. Therefore, if we have a 44 year old grandmother as the primary caregiver for her 3 grandchildren, and she is the primary caregiver for her 75 year old mother with dimentia, we have a person who is likely experiencing a lot of caregiver stress. This in turn puts all the recipients of care at risk for an array of issues that would harm the family system.
I am amazed at how so many "caring issues" are intricately interconnected, and how a change in one area of family caregiver, can produce a change in the whole picture of family caregiving. Thanks for the great post Arlene!
-Michelle
One thing I found very interesting in reading this blog was to consider the possible unintended consequences. Whereas I think it is obviously very desirable for a person to be able to receive culturally appropriate care, I also recognize that there are potential benefits and potential drawbacks to a dedicated Indigenous care home.
ReplyDeleteIn the first place, I always feel it is better whenever possible to avoid working with "mono-cultural" facilities. To me it seems that there is always a danger that this can basically turn into a form of segregation. There are two possible downsides to this; one is that there is a chance of differential treatment. For example, a government could either neglect the Indigenous home (in terms of funding, staffing, etc.) or overfund it while neglecting non-Aboriginal homes depending on which way the political wind was blowing. Secondly, from the standpoint of basic Canadian values, we try to include multiculturalism in all parts of life, and it seems counter-intuitive to suggest that mono-culturalism should be reimposed in later-life care.
Finally, I think we have to be careful that being "especially for Aboriginals" does not translate into "not for other cultures". Even if the policy was written in an inclusive fashion, that doesn't mean that, say, a recent immigrant from India would be very comfortable entering an Indigenous-specific care home. There would rightfully be an outcry if the government spent money on a Caucasian-specific care home that might result in the intentional or unintentional exclusion of members of other cultures, and I think it is important that we consider that the same concept applies in reverse. In closing, whereas I think there are definite strengths to the idea of a culturally-specific facility, I tend to wonder if it wouldn't be more inclusive and effective simply to improve the level of Indigenous cultural awareness in existing facilities.
It is an intersting topic to see where indiginouse seniors with dementia end up. It does make sense that in traditional ways, taking care of a parent is more of a common thing for indiginouse person to do since they do not follow mainstream society. Indigenouse ways also follow a system of working together in a collective manner, therefor caring for their aging parent would just be a normal thing for a indiginous person to do.
ReplyDelete~Jessica
Arlene, thank you for again reminding us that there are still cultures who value the personal care of seniors by the family. It seems however that around the world, this practice is slowly being phased out. In one of our first Aging classes, Silvia commented that while doing her PhD research, she came to realize that the cultural traditions of caring for those who are aging is diminishing around the world. This statistic is at first concerning, at it seems a loss of a person-centred tradition, however I wonder at why this is really happening.
ReplyDeleteI get the impression from many socially-minded people that the loss of this tradition is based on the individualization of western culture, and a reflection of our growing selfishness. While this is true in certain cases, I think there may be a more practical explanation; I believe it has to do with the extended life expectancy in western cultures and the quality of these extended years. People can now live longer, which seems wonderful on paper, but what do these added years look like? I have seen that they are rarely filled with winter cruises and summer gardening. People now survive disease, loss of bone mass, deteriorating cognition, and common infection, but in earlier generations, aging looked very different to the individual as well as the caregiver. Many circumstances that people are now aided in surviving would have ended very differently not many decades ago. Many will disagree, but I’m not sure that this was always bad. My grandmother hoped that her last illness would take her, and it would have had her surgery not been available. When one is young, it seems odd to hope for life’s end, but I have met many who feel the same in their last years.
When there is discussion of ‘putting the aged in homes’, a picture is conjured up of a fully functioning adult who is locked up once their hair turns grey, and wrinkles deepen. In Manitoba, personal care homes are not simply for those who reach a certain age. We do not have large group homes where all those getting up in years are kept out of sight from their families and the community at large, rather, those who have a limited ability to do their personal care (toileting, bathing, dressing, etc.) are referred to these type of long-term care facilities. I raise the question as to whether traditional caring for the aging involved all that it does today. In Manitoba, one only enters personal care homes when their care level is such that Home Care can no longer meet the individual’s needs at home. Increasingly, this means one only enters personal care when his/her care needs are quite high. Many in long-term care are tube-fed, with colostomy and nephrostomy bags that can rarely be managed in community; not even by the best-meaning family member.
I am not suggesting that parts of our system aren’t based on selfishness and western notions of what do to with those who are aging. I simply wish to make the point that traditional cultures were based as much on the realities of their time as current culture’s choices are, and that a shift to the use of long-term care is often a necessity and may have been used by earlier cultures if available.
-Nikki.
Arlene,
ReplyDeleteAs I read this blog entry I was reminded of the recent incident in which Joe McLoed, a 70 year old Aborignal man from Pine Creek First Nation pushed another resident at Parkview Place, leading to the other's mans death. One of the major concerns brought up by Pine Creek First Nation is that although they undestood that it was important for Joe to receive specialized care that was beyond their ability to provide, they would rather see improved supports in Pine Creek First Nation, rather than to have had to send Joe to Winnipeg. Pine Creek First Nation raises the issue that although it is important to provide specialized care and services to someone with Alzheimers, it is also important to utilize community and cultural supports so that they may be blended with proper health care. An even bigger concern in this case was that it is very apparent that Joe was not provided with the appropriate type of care or support otherwise the tragedy of someone dying would have never occured. This story highlights a number of complex issues, not only is it impmortant that Aboriginal seniors are given adequate and competent care, but it is also important that their culture been maintained so that one is not sacrificed for the other.
Kendall