Final Report
October 2022
Public Health Agency of Canada
Supplier name: Quorus Consulting Group Inc.
Contract award date: February 23, 2022
Delivery date: October 2022
Contract amount (incl. HST): $72,854.55
Contract #: 6D016-215360/001/CY
POR number: 128-21
hc.cpab.por-rop.dgcap.sc@canada.ca
Ce rapport est aussi disponible en français.
Prepared for Health Canada and the Public Health Agency of Canada
Supplier name: Quorus Consulting Group Inc.
October 2022
This report summarizes the findings from seven online focus groups with members of Official Language Minority Communities (OLMC) 18 years of age and older and seven in-depth interviews with unpaid caregivers and persons living with dementia who are also members of OLMCs. Data collection was held between March 28th and June 16th, 2022. Each focus group lasted approximately 90 minutes and each interview lasted approximately 40 minutes.
Cette publication est aussi disponible en français sous le titre : Communautés de langue officielle en situation minoritaire et la démence
This publication may be reproduced for non-commercial purposes only. Prior written permission must be obtained from Health Canada and the Public Health Agency of Canada. For more information on this report, please contact Health Canada at: hc.cpab.por-rop.dgcap.sc@canada.ca or the Public Health Agency of Canada at: hc.cpab.por-rop.dgcap.sc@canada.ca
Department of Health
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Catalogue Number:
H14-425/2022E-PDF
International Standard Book Number (ISBN):
ISBN 978-0-660-46428-2
Related publications (registration number: POR 128-21):
Catalogue Number H14-425/2022F-PDF (Final Report, French)
ISBN 978-0-660-46429-9
© His Majesty the King in Right of Canada, as represented by the Minister of Health, 2022
I hereby certify as Senior Officer of Quorus Consulting Group Inc. that the deliverables fully comply with the Government of Canada political neutrality requirements outlined in the Policy on Communications and Federal Identity and the Directive on the Management of Communications - Appendix C.
Specifically, the deliverables do not include information on electoral voting intentions, political party preferences, standings with the electorate or ratings of the performance of a political party or its leaders.
Signed:
July 11, 2022
Rick Nadeau, President
Quorus Consulting Group Inc.
Canada's first national dementia strategy, A Dementia Strategy for Canada: Together We Aspire was released in June 2019. It supports the vision of a Canada in which all people living with dementia and caregivers are valued and supported, quality of life is optimized, and dementia is prevented, understood, and effectively treated. The strategy identifies three national objectives: prevent dementia; advance therapies and find a cure; and improve the quality of life of people living with dementia and caregivers.
Official Language Minority Communities (OLMCs) consist of Francophones who reside outside of Quebec and English-speaking residents of Quebec. These communities are highlighted in the national dementia strategy as a population likely to face barriers to equitable care due to challenges related to accessing services and information in their first language, including being able to communicate with health professionals to correctly describe symptoms, understand health-related guidance, and receive appropriate care.
This research will assist in supporting the implementation of Canada's national dementia strategy. Furthermore, this research supports government and department priorities on dementia by contributing to the Public Health Agency of Canada's (PHAC) core responsibilities of health promotion and chronic disease prevention. Ultimately, the research findings will be used to inform PHAC programs and initiatives to ensure they reflect the distinct experiences and needs of OLMCs. It is also expected to be available to other organizations providing dementia-related services for OLMCs. Finally, this information will support annual reporting on the national dementia strategy to Parliament, as required by the National Strategy for Alzheimer's Disease and Other Dementias Act.
This project focused exclusively on OLMCs to obtain a deeper understanding of their knowledge, experiences, and attitudes related to dementia prevention and dementia-inclusiveness. Specifically, research objectives included, but were not limited to:
The research methodology consisted of seven online focus groups with members of OLMCs 18 years of age and older, and seven in-depth interviews with unpaid caregivers and persons living with dementia who are also members of OLMCs. Data collection was held between March 28th and June 16th, 2022 and included individuals from across the country. Each focus group lasted approximately 90 minutes and each interview lasted approximately 40 minutes. Participants were informed upfront that the research was being conducted on behalf of Health Canada and PHAC and they each received an honorarium of $120 for their participation. In total, 50 individuals participated in the research.
This section summarizes the findings from seven online focus groups with members of OLMCs across Canada.
Familiarity with dementia was quite mixed across all participants, where familiarity and personal experience with the condition increased as the age of participants increased. How well participants were able to describe dementia was largely tied to what they had observed through their personal experiences. As such, the bulk of the information participants were able to convey pertained to symptomology such as gradual loss of memory, being disoriented, changes in mood, etc. Many participants referred to Alzheimer's disease in this context.
The general sense, especially among younger participants, was that dementia was something that much older people can experience and that it involved the gradual decline in certain cognitive abilities, especially memory.
The extent to which participants were worried about their own risk of developing dementia was largely linked to whether one of their relatives had experienced it. A few felt that they might be at a higher risk given a previous head-related injury, such as a concussion. There was also a generally accepted perception among participants that the risk of developing dementia was related to age. As such, older participants tended to be more concerned compared to younger ones, irrespective of whether any of their relatives had developed the condition.
Although there was a broadly accepted view that dementia was related to age, participants also believed that it is possible to reduce the risk of developing dementia and that this condition is not an inevitable part of aging. Many seemed to be under the impression that by remaining active and by making sure that their mind or brain was well "exercised," dementia could be delayed if not entirely held at bay.
Very few participants had had any sort of conversation with anyone, including a healthcare provider, or had done any research on their own to better understand the risk of developing dementia or what steps they could take to reduce their risk. Information pertaining to risk factors or what steps could be taken to reduce their risk tended to be online and it tended to be in English, whether among Quebec OLMC participants or among Francophones living outside of Quebec.
Many participants suspected that genetics played an important role and many also assumed that poor health in general, including a lack of intellectual stimulation, would be a likely risk factor. Additionally, a few suspected that trauma to the head, such as a concussion, could be a contributing factor.
When the moderator presented the risk factors associated with dementia, many participants felt this was both informative and eye opening. The list prompted some to revisit their own level of risk, leading some to conclude that they may in fact be at a higher level of risk than initially suspected, especially regarding the various factors related to a "healthy lifestyle."
With a better knowledge of the risk factors, some participants indicated they had taken certain steps on their own to reduce their risk, although reducing their risk of developing dementia was purely coincidental. The steps that were most likely to be mentioned included: eating better, more exercise, cutting back on alcohol and smoking, and leading a healthier life in general. If anything, a lack of motivation and a lack of time were the most common barriers to pursuing these steps. Participation in online or in-person programs or activities in their community was fairly limited with many pointing to the pandemic as the main cause.
Given the choice to participate in community-based programs and activities in English or in French, Francophone OLMC participants were more likely to be indifferent given their level of bilingualism. Most Anglophone OLMC participants in Quebec, whether in Montreal or beyond, would prefer programs and activities in English since many do not speak French well enough or at all.
Awareness of dementia-inclusive communities was nearly non-existent. To contextualize the discussion regarding dementia-inclusive communities, the following explanation was provided to all participants:
In a dementia-inclusive community, measures are in place that make it more possible for people living with dementia to protect and improve their health and wellbeing, live independently, safely navigate and access local activities, and maintain social networks.
Given this information, all participants agreed that their community is not dementia-inclusive. With the benefit of a few examples, participants suggested that their community would become more inclusive if the following were done:
Few participants had actively sought information about symptoms or treatments. Similarly, very few were aware of or had sought information on programs or activities in their community that support people living with dementia, whether offered in English or in French.
Many explained that the healthcare system in their community would not likely meet the needs of a person living with dementia irrespective of their preferred official language. There was also some recognition that it would be important for members of OLMCs to access healthcare in their preferred official language.
This section summarizes the findings from seven in-depth interviews with members of OLMC's, among whom five were persons living with dementia and two were unpaid caregivers of persons living with dementia. The following regions are represented: Quebec, Ontario and British Columbia.
Most of the persons living with dementia had been diagnosed with dementia within the past few years, including a few who were persons with young-onset dementia. All these participants explained that they are fairly independent and for the most part, do not require constant support or supervision at this time. Nearly all persons living with dementia were living in their own homes, either with a spouse or a relative, including younger participants who lived with or had moved back in with their parents and sibling(s).
Persons living with dementia would for the most part say that their quality of life these days is fairly good. They felt they were very well supported and, other than having a diagnosis of dementia, they described their overall health as quite good. They further explained that, with the benefit of time and with more insight into their condition, they felt they had gained some perspective on their life and saw things in a brighter light than before.
When specifically asked what was most important to their quality of life, participants mostly focused on the family and friends providing them the help and support needed. Some also referred to their favourite hobbies or passions in life such as playing an instrument, singing, etc.
When asked to identify their preferred official language, participants explained that they are fairly bilingual. Anglophones living in Quebec (in the areas of Montreal and Sherbrooke) felt they had many opportunities to speak English, whereas the opposite was the case for Francophones living in Ontario and British Columbia who explained that they do not get to speak French as often as they would like, and that it was always a pleasant surprise when they met someone in their area who spoke French. Despite their bilingualism, all participants expressed a clear preference for one language over another and this was almost always the minority official language in their province. They felt more confident speaking this language, they felt they can be more open in their conversations, and a few explained that speaking the minority official language in their province was a source of comfort.
Most persons living with dementia explained that they needed very little in terms of support to live comfortably and safely, although for most of these participants, various measures or changes in their living situation had taken place to foster this general sense of comfort and safety. Some of these changes included taking a break from work and/or their studies, staying at home/not going out, moving in or living with family, and greater involvement in their hobbies. Another important contributing factor to participants' general sense of comfort and safety was access to and the availability of friends and especially family. In the end, participants felt that their needs were being met.
Nearly all persons living with dementia in this study relied exclusively on unpaid caregivers for their day-to-day support. For nearly all persons living with dementia, at least one unpaid caregiver lives with them and would be described as very involved, with contact occurring daily. Furthermore, persons living with dementia are able to speak with unpaid caregivers most central to their care in their preferred official language, which was seen as quite important for participants.
Only a few of the older participants relied on a paid care provider who tended to needs in their home. Otherwise, participants had access to a variety of healthcare professionals which included family doctors, psychologists, nurses, therapists, and specialists. Persons living with dementia in Quebec (in the areas of Montreal and Sherbrooke) did feel they could interact with their healthcare team in their preferred language (English), while Francophones living in Ontario and British Columbia could not speak their preferred language (French). That said though, some participants preferred using the language used by the majority in their province whereas others felt it was important to their care and wellbeing that they have access to a healthcare team who could speak the language spoken by the minority.
In terms of their daily and social activities, English was the common thread across all participants. Participants living in Quebec felt they were well supported in English while Francophones living outside Quebec felt they were only supported in English. Only a few in Quebec felt that their daily and social activities would suffer if they could not access them in their preferred official language. Although Francophones outside Quebec explained that access to English-only activities did not represent a barrier to participation, they suspected that they would probably be interested in exploring additional activities if they were in French.
Based on an explanation of the concept of dementia-inclusive communities (as defined earlier in this summary for focus group participants), only one participant, an unpaid caregiver, was aware of the concept. Many had difficulty imagining what such a community would look like or what measures would be in place to make it dementia-inclusive. What they did seem to recognize was that their neighbourhood, community or city was not as inclusive as it could be. A few suggestions of activities or measures that could be considered to make their community more inclusive included the following: have more activities and clubs for persons living with dementia; make information more widely available for the general public about dementia; organize information sessions to find out about programs available for persons living with dementia; have a dedicated meeting place online and/or in-person for persons living with dementia; have a committee/organization to oversee the changes in the community; and, have more visual cues and signs to orient people when they are walking around the community.
The concept did get some pushback, however. A few participants felt that dementia is something personal, that as long as their family was around them, then they have what they need and that there is no need to get the entire community involved in supporting them.
Awareness of programs, clubs and activities for the general population in their community was high. Participants were confident that they would be able to easily find out about these programs and that the language in which these programs were available would not pose any sort of barrier or motivation to participation. Challenges to participation were more likely to be a lack of work-life balance, activities being too far from home, hours of operation, and pandemic-related closures.
None of the persons living with dementia were aware of activities specifically available to persons living with dementia in the community. As well, none had looked for these types of programs since their diagnosis and even if they were to be available in their community, a few would not be interested in participating. Among those who might be interested in activities tailored for persons living with dementia, possible activities of interest included:
Nearly all participants had done some research to find information related to dementia. Common topics included:
The vast majority of this research by participants was being done online through general Google searches. Other sources included word of mouth, healthcare teams, and social media. Most of the Quebec-based participants did their research in English, which was their preferred language for this type of information. Participants in Ontario and British Columbia relied mostly on English websites with only select use of French websites. These participants were not inconvenienced by any lack of French resources since in most cases they did not even try to find French content.
Nearly all participants felt they found the information they were looking for. If challenges were encountered, they were not language-related.
Moving forward, participants were interested in a few additional dementia-related topics, including: success stories of people who were able to delay progression of the condition; whether dementia is hereditary; whether having dementia puts a pregnancy or the mother at risk; dementia-care residences; and up-to-date treatments/treatment plans. A few expressed an interest in accessing information in their preferred official language moving forward, preferably through a bilingual website.
None of the participants felt they had lost access to any type of dementia-related information sources during the pandemic. The most notable impact on persons living with dementia was the more limited access to hospitals and their health care team and access to their social network.
A few participants explained how a greater shift to online had improved or maintained access to information and programs, including eliminating some transportation-related logistical challenges.
Moving forward, as public health restrictions continue to ease, there was some interest in returning to in-person activities and programs, although online options should not be entirely cancelled. A phased-in or gradual shift back to in-person was recommended.
Qualitative research disclaimer
Qualitative research seeks to develop insight and direction rather than quantitatively projectable measures. The purpose is not to generate "statistics" but to hear the full range of opinions on a topic, understand the language participants use, gauge degrees of passion and engagement and to leverage the power of the group to inspire ideas. Participants are encouraged to voice their opinions, irrespective of whether or not that view is shared by others.
Due to the sample size, the special recruitment methods used, and the study objectives themselves, it is clearly understood that the work under discussion is exploratory in nature. The findings are not, nor were they intended to be, projectable to a larger population.
Specifically, it is inappropriate to suggest or to infer that few (or many) real world users would behave in one way simply because few (or many) participants behaved in this way during the sessions. This kind of projection is strictly the prerogative of quantitative research.
Supplier name: Quorus Consulting Group Inc.
Contract number: 6D016-215360/001/CY
Contract award date: February 23, 2022
Contract amount (including HST): $72,854.55
For more information, please contact Health Canada at: hc.cpab.por-rop.dgcap.sc@canada.ca
Dementia is an umbrella term used to describe a set of symptoms affecting brain function that are caused by neurodegenerative and vascular diseases or injuries. It is characterized by a decline in cognitive abilities including memory; awareness of person, place, and time; language; basic math skills; judgement; and planning. Dementia can also affect mood and behaviour. As a chronic and progressive condition, dementia can significantly interfere with the ability to maintain activities of daily living, such as eating, bathing, toileting, and dressing. Alzheimer's disease, vascular disease, and other types of disease all contribute to dementia. Other common types of dementia include Lewy body dementia, frontotemporal dementia, and mixed dementias. In rare instances, dementia may be linked to infectious diseases, including Creutzfeldt-Jakob disease. There is no known cure for dementia.
Dementia has a significant and growing impact on Canadians. Soon to be published data indicates that as of 2017-18, almost 452,000 Canadians 65+ or older (6.7% of all Canadians 65+) were living with diagnosed dementia. As this number does not include those under 65 who may have a young onset diagnosis nor those who have not been diagnosed, the true picture of dementia in Canada may be larger. Of those aged 65 years and older living with diagnosed dementia in Canada, almost two-thirds are women.Footnote i While dementia is not an inevitable part of aging, age is the most important risk factor. Data from the Canadian Chronic Disease Surveillance System indicates that 2.4% of Canadians aged 65-79 years had been diagnosed with dementia, including Alzheimer's disease in 2016–2017. The risk of diagnosis, however, increases exponentially with age, as 19% of individuals who were 80 years age and older in 2016-2017 were diagnosed with dementia, including Alzheimer's disease. With a growing and aging population, the number of Canadians living with dementia is expected to increase in future decades.Footnote ii
Canada's first national dementia strategy, A Dementia Strategy for Canada: Together We Aspire was released in June 2019. It supports the vision of a Canada in which all people living with dementia and caregivers are valued and supported, quality of life is optimized, and dementia is prevented, understood, and effectively treated. The strategy identifies three national objectives: prevent dementia; advance therapies and find a cure; and improve the quality of life of people living with dementia and caregivers.
Official Language Minority Communities (OLMCs) consist of Francophones who reside outside of Quebec and English-speaking residents of Quebec. These communities are highlighted in the national dementia strategy as a population likely to face barriers to equitable care due to challenges related to accessing services and information in their first language, including being able to communicate with health professionals to correctly describe symptoms, understand health-related guidance, and receive appropriate care.
It has been observed that bilingual people living with dementia often revert to their first language as symptoms progress, potentially exacerbating difficulties in being understood and in understanding the information provided to them by a care provider if support is not available in their first language. Reverting to a first language may also occur in the absence of memory loss during stressful situations or when experiencing pain. As a result, the lack of resources in a person's first language may compromise the ability to effectively navigate the health care system and receive the best advice and care available. Language barriers that reduce the accuracy of communication may result in additional or unnecessary medical tests, being offered inappropriate treatment, and situations where the patient must return for further consultation about the same health problem as a result of inappropriate treatments or misdiagnosis, which can extend wait times and lengthen the time needed to accurately diagnose and treat the health concerns. For OLMCs, a lack of easily accessible information on dementia and a lack of access to care in the official minority language can have a negative impact on the quality of care, including diagnosis and treatment, as well as patient safety.
This research will assist in supporting the implementation of Canada's national dementia strategy. Development and implementation of the strategy is a requirement under the National Strategy for Alzheimer's Disease and Other Dementias Act which came into force in June 2017. The legislation references a number of key activities to take place under the strategy including developing, assessing and disseminating guidelines and best practices related to prevention, diagnosis, treatment, and quality of life.
Furthermore, this research supports government and department priorities on dementia by contributing to the Public Health Agency of Canada (PHAC)'s core responsibilities of health promotion and chronic disease prevention. Through this core responsibility, the investments contribute to the expected achievement of three Department results:
Ultimately, the research findings will be used to inform PHAC programs and initiatives to ensure they reflect the distinct experiences and needs of OLMCs. It is also expected to be available to other organizations providing dementia-related services for OLMCs. Finally, this information will support annual reporting on the national dementia strategy to Parliament, as required by the National Strategy for Alzheimer's Disease and Other Dementias Act.
This project focused exclusively on OLMCs to obtain a deeper understanding of their knowledge, experiences, and attitudes related to dementia prevention and dementia-inclusiveness.
To the extent possible and for consistency, questions were aligned with those from similar topics in the various Public Opinion Research (POR) studies being undertaken by the Division of Aging, Seniors and Dementia (DASD), including the 2020 Dementia Survey: Final Report.
Specifically, research objectives include, but are not limited to:
This section summarizes the findings from seven online focus groups with members of OLMCs living in the following regions:
| Region | Language spoken |
|---|---|
| Ontario | French |
| Quebec (Montreal) | English |
| Atlantic Canada | French |
| Prairies (Manitoba/Saskatchewan/Alberta) | French |
| Quebec (outside Montreal) | English |
| British Columbia (two groups) | French |
Familiarity with dementia was quite mixed across all participants, where generally, familiarity and personal experience with the condition increased as the age of participants increased. Older participants were more likely to know a relative living with dementia, including some whose parent had dementia. Younger participants were more likely to have encountered dementia through their grandparents. It was largely through these experiences that participants had become familiar with dementia.
By extension, how well participants were able to describe dementia was also largely tied to symptoms they had observed through their personal experiences. Participants recounted how their relative had gradually lost their memory, they sometimes got lost or could not remember why they had gone to the store, that their mood and behaviour had changed, and that they needed increasing amounts of supervision and help.
Many participants referred to Alzheimer's disease, unsure of whether this was in fact the same as dementia, a form of dementia or something entirely different. Very few other specific types of dementia were commonly known to participants although the descriptions provided by some would suggest that their relatives had experienced vascular dementia and dementia caused by an injury.
The general sense, especially among younger participants, was that dementia was something that much older people can experience and that it involved the gradual decline in certain cognitive abilities, especially memory.
The extent to which participants were worried about their own risk of developing dementia was largely linked to whether one of their relatives had experienced it. Many participants were under the impression that dementia could be genetic or hereditary and so if one of their parents or grandparents had experienced it, they were more likely to feel like they were at a high risk themselves. A few also felt that they might be at a higher risk given a previous head-related injury, such as a concussion. Similarly, those who felt they were at a low risk explained that they did not know anyone in their family who had experienced dementia.
There was also a generally accepted perception among participants that the risk of developing dementia was related to age. As such, older participants tended to be more concerned compared to younger ones, irrespective of whether any of their relatives had developed the condition.
It is worth noting that when describing their risk of developing dementia, very few of the various risk factors explored later in the discussion were mentioned.
There was a widely held view that it is possible to reduce the risk of developing dementia and that this condition is not an inevitable part of aging. Although participants were not entirely certain about causality or risk factors beyond perhaps genetics, many seemed to be under the impression that by remaining active, dementia could be delayed, if not entirely held at bay. Many placed particular emphasis on making sure that their mind or brain needed to be well "exercised."
Very few participants had had any sort of conversation with anyone, including a healthcare provider, or had done any research on their own to better understand the risk of developing dementia or what steps they could take to reduce their risk. Those most likely to have done this were those who knew someone close to them living with dementia or were an unpaid caregiver for someone living with dementia. Some of the older participants had also explored the topic peripherally, mostly because they associate dementia with getting old. A few even felt that they had been getting a bit more forgetful over time and that this was worrying them a bit.
If any information had been found on the risk of developing dementia or what steps they could take to reduce their risk, it tended to be online and it tended to be in English, whether among Quebec OLMC participants or among Francophones living outside of Quebec. General feedback on access to and availability of this type of information in the participant's preferred official language included the following:
When it came to discussing risk factors of developing dementia, participants generally seemed to be making assumptions and guessing. As noted earlier, many suspected that genetics played an important role and many also assumed that poor health in general, including a lack of intellectual stimulation would be likely risk factors. A few also suspected that trauma to the head, such as a concussion, could be a contributing factor. Very few of the participants had a firm grasp on the full range of possible risk factors.
When the moderator presented the modifiable risk factors associated with dementia, many participants felt this was both informative and eye opening. With this new information, some could "connect the dots" regarding how some of their relatives might have developed dementia, such as an unhealthy lifestyle, excessive alcohol use, obesity, isolation, an accident, an infection, etc.
The list also prompted some to revisit their own level of risk. Some worked their way down the list of factors (similar to a checklist) and noticed that they may in fact be at a higher level of risk than initially suspected, especially regarding the various factors related to a "healthy lifestyle." Similarly, those who suspected they were at a low risk because they lead a healthy lifestyle felt the list confirmed their suspicions that they might be low risk. A few did notice that genetics were not part of the list, which surprised them.
With a better understanding of the risk factors (the list of factors remained on the screen for all to see for this part of the discussion), participants were asked whether they had taken specific steps, either on their own or due to advice of a healthcare provider, to reduce their risk for developing dementia. Some participants had taken certain steps, although without the intent to reduce their risk of developing dementia. The steps that were most likely to be mentioned included: eating better, more exercise, cutting back on alcohol and smoking, and leading a healthier life in general. Most of these participants had taken these steps on their own, with a few older participants remembering also being advised by their healthcare provider (albeit, with no specific reference to dementia in their guidance).
Participants explained that their motivations were generally to be healthier, with a few specifically referring to wanting to rectify or reduce their risk of developing certain cardiovascular-related conditions such as high blood pressure, high cholesterol, etc. Those who had a parent or a close relative who had experienced dementia also specifically referred to taking some steps to remain intellectually active (e.g., reading, puzzles, etc.).
Participants did not think much impeded them from pursuing these steps or measures – for the most part, participants tended to refer to a lack of motivation and a lack of time. None of the participants alluded to any language-related challenges, such as a lack of activities in their community available in their preferred official language.
Participation in online or in-person programs or activities in their community was fairly limited. Many explained that the pandemic had been a significant deterrent to signing up for or attending anything in person. Some did participate in online activities but few seemed to feel that this compensated for the lack of in-person community-based programs or activities. There was general agreement that as public health restrictions ease, most would be excited to return to in-person programs and activities, although some appreciated that online options should still remain to cater to all needs and preferences. As above, none of the participants explained that their lack of participation in online or in-person activities was in any way related to the language in which those activities were offered.
Given the choice to participate in community-based programs and activities in English or in French, most would opt for something in their preferred official language. Francophone OLMC participants were more likely to be indifferent, feeling that participating in such activities in French would be unexpected and quite a novelty since so few are currently available to them in French. In the end, if an activity were only offered in English, it would not deter them from participating since they were all fairly bilingual. Anglophone OLMC participants in Quebec located in Montreal felt that they had access to many programs and activities in English, which suited them. Most, whether in Montreal or beyond, would prefer programs and activities in English and many would not consider participating if these were only available in French.
Awareness of dementia-inclusive communities was nearly non-existent. Upon hearing the term, some suspected that this referred to certain types of long-term care facilities dedicated to people living with dementia and a select few referred to gated communities, or "villages." But otherwise, very few could describe a dementia-inclusive community.
To contextualize the discussion regarding dementia-inclusive communities, the following explanation was provided to all participants:
In a dementia-inclusive community, measures are in place that make it more possible for people living with dementia to protect and improve their health and wellbeing, live independently, safely navigate and access local activities, and maintain social networks.
In addition to this information, participants were informed that the concept referred to an entire neighbourhood or part of a city or town (and not just a building or a gated area). Based on this explanation, all participants agreed that their community is not dementia-inclusive. Many struggled to describe how their community would need to change to become more inclusive, and in most groups, the moderator needed to provide some examples of what some communities have done. With this extra information, a few of the suggestions proposed by participants included the following:
Most participants felt comfortable interacting with a person living with dementia in a social or work situation but many also felt that they would probably benefit from some "training."
As noted earlier, few participants had sought specific information on dementia in English or in French, including information about symptoms or treatments. If such information had been researched, it was for someone else they knew who was living with dementia. Similarly, very few were aware of any programs or activities in their community that support people living with dementia, whether in English or in French. Of the few who had accessed such programs, organizations like the ASC were mentioned. Most noted however, that they had never done any research to seek out these types of programs or services.
As for the healthcare system in their community, many explained that what was available in their communities would not likely meet the needs of a person living with dementia irrespective of their preferred official language. That said, participants tended to agree that the local healthcare system is extremely ill-equipped from a language skills perspective to support Francophones living with dementia outside Quebec and Anglophones in Quebec.
There was also some recognition that it would be important for members of OLMCs to access healthcare in their preferred official language. They came to this conclusion a few different ways. Some put themselves in the situation of someone living with dementia and determined that they would not be well served in the official language they know the least or not at all. A few could speak of someone they knew who lived with dementia and could see how important and valuable it was that they could speak to their healthcare team in their preferred official language. As well, a few had parents or relatives whose mother tongue was not English or French (although they could speak one of these two languages), and they could recall how they had reverted to their mother tongue more and more as their dementia evolved.
This section summarizes the findings from seven in-depth interviews with members of OLMC's, among whom five were persons living with dementia and two were unpaid caregivers of persons living with dementia. The following regions are represented: Quebec, Ontario and British Columbia.
The early part of each in-depth interview focused on the overall quality of life of persons living with dementia, with a particular focus on living arrangements, perceived quality of life and the factors contributing to that quality of life, including being able to speak their preferred official language.
Most of the persons living with dementia had been diagnosed with dementia within the past few years, including a few who were persons with young-onset dementia. All these individuals explained that they are fairly independent and, while some of their activities have in some ways been limited, for the most part they do not require constant support or supervision.
Living arrangements reflect this level of quasi-autonomy. Nearly all persons living with dementia live in their own homes, either with a spouse or a relative, while only one lived on their own. Younger participants live or had moved back in with their parents and sibling(s).
When asked to describe their quality of life these days, persons living with dementia would for the most part say that their life was fairly good. They felt they were very well supported, and, other than having a diagnosis of dementia, they would describe their overall health as quite good. A few explained how they had really struggled post-diagnosis – they had stopped working, they had taken a break from post-secondary studies, they were worried about experiencing the worst aspects of dementia, and they became homebound. Anxiety or depression were triggered in a few cases.
As well, the COVID-19 pandemic compounded some of these major changes in their life and, in some ways, introduced different types of barriers. For instance, the pandemic limited access to certain support networks or valued activities such as socializing with friends and family outside the home, going to the gym, etc.
The pandemic had more detrimental impacts on older persons living with dementia:
"With COVID unfortunately, her verbal and memory have gotten worse. The fact of being more isolated, the stress of all the changes with the regulations and activities. Physically she is well, cognitively she is moderate-severe. She is well taken care of but her daily living skills have deteriorated over the past 2 years." – Unpaid caregiver in Quebec
They further explained that, with the benefit of time and insight into their condition, most of the participants living with dementia have gained some perspective on their life and saw things in a brighter light than before. Some of the sentiments shared in relation to this included the following:
"…music helps manage my emotions and my negative thoughts." - Person living with dementia in Ontario
When specifically asked what was most important to their quality of life these days, participants mostly focused on those who are providing them the help and support needed. For most, this tended to be their family or close relatives. Some also referred to their favourite hobbies or passions in life such as playing an instrument, singing, etc.
For a person living with dementia who was much older and more advanced in the progression of the dementia, their unpaid caregiver explained that being safe in their own home was the most important consideration to their quality of life. The notion of safety was multi-faceted – being safe in their own home meant not being in a long-term care facility which by extension meant being safe from the many COVID-related outbreaks in those types of institutions during the pandemic. It also meant they were living in a controlled environment since their spouse lives with them at home, a paid care provider comes daily and there are various safety measures in place throughout the home (such as cooking safety features) to maximize their wellbeing.
None of the participants directly pointed to being able to speak their preferred official language as a contributing factor to their quality of life. To gain a better understanding of how important a factor this might be, the moderator needed to specifically ask about this topic which led to a handful of language-related considerations.
First, all participants explained that they were fairly bilingual. Although they have a preferred official language, which was the minority official language in their province, they explained that they would be able to confidently read documents or have a conversation in the dominant official language of their province.
Second, opportunities to speak the minority official language were mixed across participants. Those living in Quebec (in the areas of Montreal and Sherbrooke) did feel they had many opportunities to speak English. The opposite was the case for Francophones living in Ontario and British Columbia who explained that they primarily spoke French in their household and with friends and relatives living outside the province. These Francophones also explained that they do not get to speak French as often as they would like and that it was always a pleasant surprise when they met someone in their area who spoke French.
Thirdly, although they would consider themselves bilingual, all participants expressed a clear preference for one language over another and this was almost always the minority official language in their province. Participants explained that they generally felt more confident speaking this language and they felt they can be more sincere and open in their conversations, whether those conversations are personal or with healthcare professionals. A few also explained that speaking the minority official language in their province was a source of comfort, and one Franco-Ontarian explained that they get an emotional high when they speak and sing in French.
« C'est très important. C'est ma langue maternelle. La langue que je me sens le plus confortable à parler. Quand je parle avec les docteurs, je préfère le français. […] Quand on me parle de mon état de santé ou de ma santé mentale, je préfère que ce soit en Français. J'ai l'impression que c'est plus personnalisé. » - Person living with dementia in Ontario ["It's very important. It is my mother tongue. The language I feel most comfortable talking. When I talk to the doctors, I prefer French. […] When someone talks to me about my physical or mental health, I prefer they use French. I feel it's more personal."]
That said, a few participants felt that they had become so accustomed to their linguistic environment that they would now prefer to speak the language spoken by the majority. One Francophone did however explain that, despite a preference for French, they resorted to English for two main reasons: it is what everyone around them speaks and any attempt they made to find or use French material had led to frustration given the poor quality of the translation from English.
Support systems were explored from a variety of perspectives in this research with a focus on how much support is needed, who provides this support (distinguishing between unpaid caregivers and paid care providers) and ultimately, how important language is in the overall support provided.
In terms of how much support participants felt they needed each day to live comfortably and safely in their current situation, nearly all felt they do not require much. Needs ranged from "nothing at all", which was the case with one participant who had received their diagnosis within the past few years and actively worked full-time outside the home and lives by themselves, to 24-hour supervision, which was the case for an elderly person living with dementia whose unpaid caregiver described as having deteriorated a great deal over the past few years. All other participants explained that they needed very little in terms of support to live comfortably and safely, although for most of these participants, various preventative measures or changes in their living situation had taken place to foster this general sense of comfort and safety. Some of these changes included the following:
Another important contributing factor to participants' general sense of comfort and safety was access to and the availability of friends and especially family. Persons living with dementia either lived with family members who supported them and/or they lived nearby. Support was also available from friends and family members further afield through videoconferencing, social media, and telephone conversations. All participants explained how members of their family had taken on new roles and responsibilities regarding their care, and although it might not require large efforts, these efforts were nonetheless noticed and impactful. Some of the actions taken by family members included preparing some meals, financial support, being available for conversations, doing research on dementia, and driving or accompanying persons living with dementia to appointments, to pick up medication, and to do chores outside the home such as groceries.
A few participants also explained that their sense of comfort and safety was in part derived from the support and impact of their healthcare team and their medication.
« J'ai ma famille, mes pilules et ma musique – je suis chanceux. Je n'ai besoin de rien d'autre! » - Person living with dementia in Ontario ["I have my family, my medication and my music. I am lucky. I don't need anything else."]
In the end, participants felt that their needs were being met. That said, a few did not want to appear as "needy" in life in general and this was reflected in their responses. These participants emphasized that they did not want to bring undue attention to themselves or to their condition and stressed that in the grand scheme of things, their needs were well met and they did not want people to see them any differently than they did before.
Nearly all participants saw themselves as healthy and not requiring any support for any other condition or disease beyond dementia. A few younger participants indicated they experienced depression or anxiety, but that this was quite secondary to their diagnosis of dementia.
Nearly all persons living with dementia in this study relied exclusively on unpaid caregivers for their day-to-day support. While they all had a healthcare team that included some combination of a family doctor, therapists, specialists and nurses, only a few of the older participants relied on a paid care provider who tended to needs in their home.
As noted earlier, a significant number of unpaid caregivers live with the participants. These included spouses, parents, and siblings. Additionally, support was provided by friends and by other members of the extended family who do not live with the participant. There was only one mention of volunteers or students contributing to the support. All participants would describe these unpaid caregivers as very involved, with contact occurring daily.
Persons living with dementia were able to speak with unpaid caregivers most central to their care in their preferred official language, which was seen as quite important for participants. Participants explained how speaking their preferred language with their unpaid caregivers instilled a sense of comfort in them.
"It is very important. Especially given the cognitive restrictions, for her to feel comfortable she needs to be able to communicate in a language in which she feels comfortable. […] If she could not speak to her caregivers, she would not feel motivated, she would not want to participate in activities or engage." – Unpaid caregiver in Quebec
Some, especially younger participants, also explained how speaking their first official language stimulated childhood memories, which in turn conjured sentiments of safety and wellbeing.
"I've spoken in English with [my parents] since I was a baby so it does provide a feeling of protection. Speaking English makes me feel better, more reassured." - Person living with dementia in Quebec
A few also explained how speaking in French with their immediate circle of friends and family stimulated brain activity and helped them manage their dementia. One participant's psychologist encouraged them to use both official languages as much as possible to activate different parts of the brain.
« La démence c'est comme des trous dans ton cerveau, il y a des liens qui disparaissent, et en parlant français ça vient faire des connections. » - Person living with dementia in British Columbia ["Dementia is like holes in your brain. Some links disappear and by speaking French, the links are established"]
As noted earlier, only a few of the older participants relied on a paid care provider who tended to needs in their home. Otherwise, participants had access to a variety of healthcare professionals which included family doctors, psychologists, nurses, therapists, and specialists. It is worth noting that obtaining a comprehensive inventory of healthcare professionals for each participant was not a research objective and so the resulting list is general in nature.
When it comes to the official language used with their healthcare team, results aligned with the language that participants' felt they can use in the community in general. As such, those living in Quebec (in the areas of Montreal and Sherbrooke) felt they could interact with their healthcare team in English. The opposite was the case for Francophones living in Ontario and British Columbia, where interactions with healthcare professionals were exclusively in English.
In terms of preferences, some participants preferred using the language used by the majority in their province, whereas others felt it was important to their care and wellbeing that they have access to a healthcare team who could speak the language spoken by the minority. Some of the logic used by participants on this topic included the following:
"The doctor would explain some of the things about the patterns in my brain having to do with dementia. I understand this better in English. [MODERATOR: What does this lead to?] I have a better understanding of what is going on with me – I am more in control." - Person living with dementia in Quebec
The research sought to explore how well participants felt their communities supported their preference for their official language of choice, and whether they had access to activities in their community. Overall, the discussion sought to understand the extent to which participants felt their community was dementia-inclusive, and what changes they would suggest to improve their community in that respect.
In terms of their various daily and social activities, English was the common thread across all participants. Participants living in Quebec felt they were well supported in English, while Francophones living outside Quebec felt they were only supported in English. Only a few in Quebec felt that their daily and social activities would suffer if they could not access them in their preferred official language. Although Francophones outside Quebec explained that access to English-only activities did not represent a barrier to participation, they suspected that they would probably be interested in exploring additional activities if they were in French.
To contextualize the discussion regarding dementia-inclusive communities, the following explanation was provided to all participants:
In a dementia-inclusive community, measures are in place that make it more possible for people living with dementia to protect and improve their health and wellbeing, live independently, safely navigate and access local activities, and maintain social networks.
Based on this information, only one participant, an unpaid caregiver, felt they were aware of the concept of dementia-inclusive communities. They had heard of "dementia villages" in the United States, which they described as an area in which someone with dementia can navigate around in a secure setting - they can safely get groceries, there are safe delimited paths, etc. They further explained that in these villages, they have access to services, both paid and unpaid. Otherwise, participants had no knowledge of dementia-inclusive communities, and for the most part had difficulty imagining what one would look like or what measures would be in place to make such a community dementia-inclusive. What they did seem to recognize was that their neighbourhood, community, or city was not as inclusive as it could be. An indicator for one participant was how little they knew of others in their area with dementia or how widespread dementia is. Another indication that their community was not as inclusive as it could be was how others outside their home don't know about their condition.
How well participants felt their communities supported their preference for their official language of choice was not a top-of-mind consideration when participants assessed how dementia-inclusive their communities were.
Participants proposed some activities or measures that could be considered to make their community more inclusive. Suggestions included the following:
Although participants had suggestions to improve the dementia-inclusive nature of their community, a few were not entirely convinced that dementia should be a community-wide concern. The sentiment behind this opinion was that these participants felt that dementia is something personal and they were not interested in making their condition known to more people than is absolutely necessary. As such, there was no urgent or strong interest in seeing communities or cities change just to accommodate them – as long as their family was around them, then they have what they need. One participant also raised a concern for their personal safety by suggesting that if their situation were more widely known in the community, they might be taken advantage of somehow.
There was also some doubt about whether people in the community would want to volunteer to make the community more dementia-inclusive. A few suspected that dementia is something that communities are trying to avoid or forget about, rather than embrace. They explained that sometimes even close relatives struggled to support someone with dementia and by extension, they cannot see a community doing it.
« La démence n'est pas quelque chose donc les gens aiment parler. C'est quelque chose qui fait peur. […] Il y a des gens que je connaissais au collège qui me connaissaient bien et ils ont appris ça de bouche à oreille, des choses se répandent quand on ne le veut pas et ils ne me regardent plus jamais de la même façon. » - Person living with dementia in Ontario ["Dementia is not something people like to talk about. It can be scary. […] People I knew in college and who knew me well heard about it from word-of-mouth, news go around even when we don't want to, and they don't look at me the same now."]
"People don't want to talk about it. They don't want to see it. […] It's unfair – it's depressing." - Person living with dementia in Quebec
"My "community" is my family right now. It's very personal. […] I don't want to be a poster boy." - Person living with dementia in Ontario
Awareness of programs, clubs and activities for the general population was high among participants. Participants were confident that they would be able to find out about these programs fairly easily and that the language in which these programs were available did not pose any sort of barrier or motivation to participation. Some of the challenges to participation that did surface included: not having the right work-life balance to find the time to participate, activities being too far from home, the times of the day or days of the week that activities are available do not align with their schedule, and closures because of the pandemic. Many participants also explained how they cut back on social activities after their diagnosis, either because they did not want to take any unnecessary risks by being in public or they did not feel like being around other people: "I did not want to go out, and my parents respected that."
Examples of the some of the social activities in which persons living with dementia participated included:
For participants from Ontario and British Columbia, these activities were rarely or ever available in the participant's preferred official language. As noted earlier, this did not represent any sort of barrier to participation. Reactions were somewhat mixed when asked whether interest in social activities would be higher if they were available in French. While one participant felt "it would be nice" if more activities were in French since it would be new and different, others did not feel it would be necessary and preferred doing some activities, such as singing, in English.
Reactions were also mixed in Quebec where one participant would prefer activities in French primarily because it would be easier for those organizing the activity, while another participant felt access to English activities would be quite important to them.
None of the persons living with dementia were aware of activities specifically available to persons living with dementia in the community.
"I am not sure how to get the information – it is not very clear – access to get this information is not easy – maybe there needs to be more information on websites, in publicities, on the TV." - Person living with dementia in Quebec
Awareness was low but feedback also suggests that interest is also somewhat limited among some of the persons living with dementia. None of them had looked for these types of programs since their diagnosis and even if they were to be available in their community, a few would not be interested in participating.
"I did not want to rely on the outside world more than I have to. I did not look for communities that spoke about dementia." - Person living with dementia in Quebec
One of the unpaid caregivers in Quebec was aware that their mother participated in activities at a local recreation centre twice a week which includes yoga, walking, and art activities. They were also aware of programming made available by the ASC and the Cummings Centre. Local universities, including Concordia, University of Montreal and McGill, also have labs specifically for language and communication support. They felt that they do not face many barriers participating in these programs but admits that their mother's deteriorating language skills is making it more difficult for them to participate. They also explained how access to certain types of labs and research groups is contingent on certain eligibility criteria, which is making it harder for their mother to access them given the deterioration in their condition when in fact it is these types of individuals who need access to these programs the most.
Among persons living with dementia who might be interested in programming specifically for persons living with dementia, a few felt that these activities would need to be close to where they live since they would not be able to stray too far from home on their own. Another stressed that these activities would need to be a judgement-free and open-minded environment. A few participants provided a range of suggestions in terms of activities that could be considered and of interest:
Although participants had not done much research to find dementia-specific programs in their community, nearly all had done some research to find information related to dementia. The types of information sought have included the following:
One of the unpaid caregivers explained that their mother was not the one doing this research, but rather the personal care team. As well, a few persons living with dementia explained that they were not interested in doing research on dementia. They were either afraid to find out more about their condition, or would rather not dwell on their condition and left the research to close family members.
The vast majority of this research was happening online through general Google searches. Many did their research post-diagnosis and resorted to a variety of websites, none of which could be remembered. Other sources of information included word of mouth such as parents, resources from their healthcare team, and social media (notably Facebook and Instagram).
Most of the Quebec-based participants did their research in English, which was their preferred language for this type of information. As one participant specified, "this allowed me to stay in my comfort zone." The Quebecer who did their research in French explained that they were indifferent regarding the language of the information they found given their comfort with both official languages. Participants in Ontario and British Columbia relied mostly on English websites with only select use of French websites. These participants were not inconvenienced by the lack of French resources since in most cases, they did not even try to find French content.
Nearly all participants felt they found the information they were looking for. If challenges were encountered, they were not language-related. Challenges included trying to find up-to-date information (or finding it hard to remain updated on new resources and treatments), not finding information about a cure, and finding too much information on topics such as brain stimulation activities that is not validated.
"There is a lot of anecdotal information but it is really hard to get it validated. You are left in the unknown." – Unpaid caregiver in Quebec
Moving forward, participants were interested in a few additional dementia-related topics, including the following:
A few expressed an interest in accessing information in their preferred official language moving forward, preferably through a bilingual website. A few mentioned wanting to use established or government websites, and one participant stressed the importance of well translated French content.
The research also explored whether participants felt the COVID-19 pandemic had changed how they can access information, programs and care related to dementia. None of the participants felt they had lost access to any type of information in which they were interested. The most notable impact on persons living with dementia was the more limited access to hospitals and their healthcare team. They also explained how the pandemic limited their access to their social network and cut off from seeing friends and family. As one participant explained, the pandemic left them home-bound and too often in front of a television or a computer watching depressing news about what was happening in the world.
A few participants explained how a greater shift to online had improved or maintained access to information and programs, including eliminating some transportation-related logistical challenges. That said, this shift did not go without its challenges. In particular, an unpaid caregiver explained that because of their mother's cognitive loss and greater dependence on visual stimuli, "using Zoom has created some confusion – there is a lack of stimulation…although it's been logistically easier in terms of transportation."
Moving forward, as public health restrictions continue to ease, there was some interest in returning to in-person activities and programs, although online options should not be entirely cancelled. A phased-in or gradual shift back to in-person was recommended especially since it might not be easy for home-bound persons living with dementia to suddenly be asked to interact with groups of people in person. As well, transportation challenges cannot be solved overnight, including the financial impact of the price of gas these days.
Overview: The research methodology consisted of seven online focus groups with members of Official Language Minority Communities (OLMC) 18 years of age and older and seven in-depth interviews with unpaid caregivers and persons living with dementia who are also members of OLMCs. Data collection was held between March 28th and June 16th, 2022 and included individuals from across the country. In total, 50 individuals participated in the research.
Quorus was responsible for coordinating all aspects of the research project including working with the client team in designing and translating the recruitment screener and the moderation guide, coordinating all aspects of data collection logistics, including participant recruitment, providing the online and telephone-based data collection platforms, moderating all focus groups and interviews, and delivering required reports at the end of data collection. The research approach is outlined in greater detail below.
The target population of the focus groups were OLMC adults 18 years of age or older. The target population for the individual interviews were people living with dementia and/or unpaid dementia caregivers who reside in OLMC's.
In the design of the recruitment screener, specific questions were inserted to clearly identify whether participants qualified for the research program and to ensure, where applicable, a good representation across core socio-demographic dimensions such as age, gender, socioeconomic status, region, rural/urban location and ethnicity/cultural background.
In addition to the general participant profiling criteria noted above, additional screening measures to ensure quality respondents included the following:
Data collection consisted of online focus groups with members of OLMCs at least 18 years of age, each lasting approximately 90 minutes. It also consisted of in-depth telephone interviews with unpaid caregivers and persons living with dementia who are also members of OLMCs, each lasting approximately 40 minutes.
For each focus group, Quorus recruited eight participants with the goal of achieving six to eight participants per session. All focus group and interview participants were offered an honorarium of $120 after their session.
Participants invited to participate in the focus groups were recruited by telephone through random digit dialing of the general public, through the use of a proprietary opt-in database and via referrals. Health Canada/the Public Health Agency of Canada (PHAC) and the recruitment partner also contacted various OLMC organizations and organizations supporting persons living with dementia so that they in turn could reach out to the target audience in an effort to promote and encourage qualified participants to contact the recruitment team.
Despite these various efforts, the recruitment process encountered important challenges when attempting to recruit persons living with dementia who are also members of OLMCs. This resulted in a final research frame that differed from the intended research frame. The following challenges were encountered:
The recruitment of participants followed the screening, recruiting and privacy considerations as set out in the Standards for the Conduct of Government of Canada Public Opinion Research–Qualitative Research. Furthermore, recruitment respected the following requirements:
At the recruitment stage and at the beginning of each focus group, participants were informed that the research was being conducted for Health Canada/PHAC. Participants were informed of the audio/video recording of their session and of the potential presence of Health Canada/PHAC observers. Quorus ensured that prior consent was obtained at the recruitment stage and before participants began their session.
All online focus groups were conducted in the evening after regular business hours whereas in-depth telephone interviews were conducted at the times that were most convenient to participants. The research team used the Zoom platform to host and record focus group sessions (through microphones and webcams connected to the moderator and participants' electronic devices, such as their laptop, tablet or smartphone) enabling client remote viewing.
A total of seven online focus groups were conducted. The details of these groups are outlined in the table below.
| Date | Region | Language | Participants |
|---|---|---|---|
| March 28, 2022 | Ontario | French | 6 |
| March 29, 2022 | Quebec (Montreal) | English | 6 |
| April 4, 2022 | Atlantic Canada | French | 7 |
| April 4, 2022 | Prairies (MB/SK/AB) | French | 6 |
| April 6, 2022 | Quebec (outside Montreal) | English | 6 |
| April 6, 2022 | British Columbia | French | 4 |
| June 16, 2022 | British Columbia | French | 8 |
| TOTAL: 43 | |||
The locations, attendance, language and dates for the in-depth interviews are presented in the grid below:
| Interview # | Date | Region | Segment | Language |
|---|---|---|---|---|
| 1 | March 29, 2022 | Quebec | Unpaid caregiver | English |
| 2 | March 29, 2022 | Quebec | Unpaid caregiver | English |
| 3 | April 8, 2022 | Quebec | Person living with dementia |
English |
| 4 | April 11, 2022 | British Columbia | Person living with dementia |
French |
| 5 | April 12, 2022 | Ontario | Person living with dementia |
French |
| 6 | April 13, 2022 | Quebec | Person living with dementia |
English |
| 7 | April 15, 2022 | Ontario | Person living with dementia |
French |
*The research involved persons living with dementia across a range of ages, including individuals living with young onset dementia. While rare, someone can be diagnosed with dementia in their 20s and 30s.
Specifications
All times are stated in local area time unless specified otherwise.
| Group 1 | Group 2 | Group 3 | Group 4 |
|---|---|---|---|
Ontario - FR |
Quebec (Montreal) - EN |
Atlantic Canada - FR |
Prairies (MB/SK/AB) - FR |
| Group 5 | Group 6 | ||
| Quebec (Outside Montreal) - EN April 6 5:30 pm EST |
BC/Yukon - FR April 6 5:00 pm PST |
||
| Individual Interview Structure | Language | Approximate Number of Interviews per Region |
|---|---|---|
| Atlantic (Nova Scotia, PEI, NFLD, New Brunswick) | French | 2 |
| Ontario | French | 2 |
| B.C. /Yukon | French | 2 |
| Quebec | English | 2 |
| Prairies (AB, SK, MB) | French | 2 |
| Total | 10 | |
**Interviews will be scheduled from March 21 to April 10. At least 4 of the 10 interviews should be scheduled on or before March 31st.
Questionnaire
Hello/Bonjour, my name is [NAME]. I am calling from Quorus Consulting Group, a national public opinion research company. We're conducting a research study on behalf of the Government of Canada with people in your area. Would you prefer to continue in English or French? / Préférez-vous continuer en anglais ou en français?
As I was saying – we are conducting research with people in your area on behalf of the Government of Canada, more specifically, Health Canada and the Public Health Agency of Canada.
[INSERT FOR REGIONS OUTSIDE QUEBEC] This is for the purposes of hearing from those whose mother tongue or preferred official language is French living outside Quebec on their level of awareness of various health conditions and to hear their views on access to information and support in their official language of choice in their region.
[INSERT FOR QUEBEC] This is for the purposes of hearing from those whose mother tongue or preferred official language is English living in Quebec on their level of awareness of various health conditions and to hear their views on access to information and support in their official language of choice in their region.
Participation is completely voluntary and your decision to participate or not will not affect any dealings you may have with the Government of Canada. We are interested in your opinions and your experiences. No attempt will be made to sell you anything and at no point will you be asked to share personal information. We are not asking you to participate right now – at this stage we are simply reaching out to invite Canadians to focus groups and interviews scheduled for late March and early April. People who take part will receive a cash gift to thank them for their time. No matter how you participate, all your opinions will remain anonymous and will be used for research purposes only in accordance with laws designed to protect your privacy.
RECRUIT ANGLOPHONES IN MONTREAL FOR QUEBEC GROUP 1 AND ANGLOPHONES OUTSIDE OF MONTREAL FOR QUEBEC GROUP 2. ALSO AIM FOR A MIX FOR EACH INDIVIDUAL INTERVIEW.
PARTICIPANT NEEDS TO HAVE LIVED IN THEIR CURRENT COMMUNITY FOR AT LEAST 2 YEARS.
| Yes | No | |
|---|---|---|
| A marketing research firm | 1 | 2 |
| A magazine or newspaper, online or print | 1 | 2 |
| A radio or television station | 1 | 2 |
| A public relations company | 1 | 2 |
| An advertising agency or graphic design firm | 1 | 2 |
| An online media company or as a blog writer | 1 | 2 |
| The government, whether federal, provincial or municipal | 1 | 2 |
| Paid caregiver to people living with dementia | 1 | 2 |
| Healthcare professional or worker with expertise in neurological disorders including dementia | 1 | 2 |
IF YES TO ANY OF THE ABOVE, THANK AND DISCONTINUE.
IF "YES, SELF", SCHEDULE FOR INDIVIDUAL INTERVIEWS WITH PEOPLE LIVING WITH DEMENTIA AND CONTINUE TO Q10;
IF "YES, SOMEONE ELSE FROM HOUSEHOLD", ASK TO SPEAK TO THAT PERSON IF POSSIBLE AND REPEAT INTRO;
IF "NO", CONTINUE TO Q13.
IF INTERESTED IN REVIEWING QUESTIONS, RECORD EMAIL AND SEND SCREENER QUESTIONS. SCHEDULE A CALL-BACK TO COMPLETE PROFILING QUESTIONS.
AIM FOR 50/50 SPLIT OF MALE AND FEMALE, WHILE RECRUITING OTHER GENDER IDENTITIES AS THEY FALL
RECRUIT A MIX OF AGES IN EACH FOCUS GROUP.
RECRUIT A MIX ACROSS ALL GROUPS AND INTERVIEWS AS MUCH AS POSSIBLE.
RECRUIT A MIX ACROSS ALL GROUPS AND INTERVIEWS AS MUCH AS POSSIBLE.
RECRUIT A MIX ACROSS ALL GROUPS AND INTERVIEWS AS MUCH AS POSSIBLE.
IF "YES, SELF", RECRUIT FOR FOCUS GROUPS BUT FLAG AS POTENTIAL ONE-ON-ONE INTERVIEW.
IF NEEDED: A caregiver is defined as a person who provides care and support to a person with dementia, and who is not a paid care professional or personal care worker. A caregiver is likely to be a relative, close friend, neighbour or volunteer. Support provided by a caregiver may include assisting with the activities of daily living and helping with advance care planning.
RECRUIT A MIX ACROSS ALL GROUPS AND INTERVIEWS AS MUCH AS POSSIBLE.
RECRUIT A MIX ACROSS ALL GROUPS AND INTERVIEWS AS MUCH AS POSSIBLE.
FOR EACH GROUP, RECRUIT ~2 INDIVIDUALS WHO LIVE IN A CITY OR TOWN WITH A POPULATION OF NO MORE THAN 30,000 (Q20=3 or 4)
FOR EACH GROUP, RECRUIT A MIX OF THOSE FROM OLMC CLUSTERS ("ALL OR ALMOST ALL SERVICES ARE AVAILABLE TO THEM IN LANGUAGE OF CHOICE") AND MORE ISOLATED AREAS.
THANK/TERMINATE IF RELATED TO DEMENTIA
RECRUITER NOTE: WHEN TERMINATING AN INTERVIEW, SAY: "Thank you very much for your cooperation. We are unable to invite you to participate because we have enough participants who have a similar profile to yours."
Would you still be interested and available to take part in this study?
To conduct the session, we will be using a screen-sharing application called Zoom. We will need to send you by email the instructions to connect. The use of an Internet-connected computer, tablet, or smartphone and a quiet room are necessary.
We recommend that you click on the link we will send you a few days prior to your session to make sure you can access the online meeting that has been setup and repeat these steps at least 10 to 15 minutes prior to your session.
As we are only inviting a small number of people to attend, your participation is very important to us. If for some reason you are unable to attend, you cannot send someone to participate on your behalf - please call us so that we can get someone to replace you. You can reach us at [INSERT NUMBER] at our office. Please ask for [INSERT NAME].
So that we can contact you to remind you about the focus group or in case there are any changes, can you please confirm your name and contact information for me? [READ INFO AND CHANGE AS NECESSARY.]
First name
Last Name
Email
Day time phone number
Night time phone number
Thank you!
If the respondent refuses to give his/her first or last name or phone number please assure them that this information will be kept strictly confidential in accordance with the privacy law and that it is used strictly to contact them to confirm their attendance and to inform them of any changes to the interview. If they still refuse THANK & TERMINATE.
Would you still be interested and available to take part in this study?
Do you require any other accommodations or assistance in order to participate in your interview? Please note that sometimes participants are asked to read text or write out answers during the discussion.
As we are only inviting a small number of people to attend, your participation is very important to us. If for some reason you are unable to attend, you cannot send someone to participate on your behalf - please call us so that we can get someone to replace you. You can reach us at [INSERT NUMBER] at our office. Please ask for [INSERT NAME].
So that we can contact you to remind you about your interview or in case there are any changes, can you please confirm your name and contact information for me? [READ INFO AND CHANGE AS NECESSARY.]
First name
Last Name
Email (OPTIONAL)
Day time phone number
Night time phone number
Thank you!
If the respondent refuses to give his/her first or last name or phone number please assure them that this information will be kept strictly confidential in accordance with the privacy law and that it is used strictly to contact them to confirm their attendance and to inform them of any changes to the interview. If they still refuse THANK & TERMINATE.
Focus Group Moderation Guide
Health Canada and the Public Health Agency of Canada
OLMC Dementia Study 2022
Thank you all for joining this online focus group!
Any questions?
INTRODUCTIONS: Let's go around – please tell us your name and a little bit about yourself, such as where you live, who lives with you, what you do for a living, etc.
Familiarity With and Attitudes Regarding Dementia (15 minutes)
[MODERATOR TO SHARE DEFINITION ON SCREEN]
Dementia is a term used to describe symptoms affecting brain function. It may be characterized by a decline in cognitive abilities such as: memory; planning; judgement; basic math skills; and awareness of person, place and time. Dementia can also affect language, mood and behaviour, and the ability to maintain activities of daily living.
Dementia may be caused by neurodegenerative diseases (affecting nerve cells in the brain), vascular diseases (affecting blood vessels like arteries and veins) and injuries.
Types of dementia include vascular, Lewy body, frontotemporal, Alzheimer's disease and mixed. In rare instances, dementia may be linked to infectious diseases, including Creutzfeldt-Jakob disease, or caused by injuries.
IF YES:
[MODERATOR TO SHARE RISK FACTORS ON SCREEN]
Just so we are all on the same page – here are the risk factors associated with dementia.
IF YES:
IF YES:
[MODERATOR TO SHARE ON SCREEN]
In a dementia-inclusive community, measures are in place that make it more possible for people living with dementia to protect and improve their health and wellbeing, live independently, safely navigate and access local activities, and maintain social networks.
Let's turn our attention to information and programs available to individuals living with dementia and those who care for them.
Before I let you go, is there anything else you believe I need to understand regarding your access to information, resources or support related to dementia in English/French?
Thanks again! The team that invited you to participate in this session will contact you regarding the manner in which you can receive the incentive we promised you.
Thank you – have a nice evening!
In-Depth Interview Guide (for people living with dementia)
Health Canada and the Public Health Agency of Canada
OLMC Dementia Study 2022
Thank you for agreeing to participate in this interview.
Any questions?
I'd like to start off with a few questions to help me get to know you a bit better.
One of my main goals today is to get your feedback on how easy it is for you to access support, resources and information related to dementia. As a person living with dementia, you are in a great position to help me understand if there are important things missing in your community.
IF NEEDED: A caregiver is defined as a person who provides care and support to a person with dementia, and who is not a paid care professional or personal care worker. A caregiver is likely to be a relative, close friend, neighbour or volunteer. Support provided by a caregiver may include assisting with the activities of daily living and helping with advance care planning.
EXPLORE AS NEEDED:
IF YES:
IF NO:
IF YES:
IF NO:
PARTICIPANT CHECK-IN
How are you doing so far? Would you like to take a short break or keep going with a few more questions?
Let's talk a bit more broadly about the community of [INSERT CITY/TOWN].
IF NO ACTIVITIES ARE AVAILABLE IN ENGLISH/FRENCH:
In a dementia-inclusive community, measures are in place that make it more possible for people living with dementia to protect and improve their health and wellbeing, live independently, safely navigate and access local activities, and maintain social networks.
IF YES:
IF YES:
IF DIFFICULT OR IMPOSSIBLE:
PARTICIPANT CHECK-IN
How are you doing so far? Would you like to take a short break or keep going with a few more questions?
Let's turn our attention to how easy or difficult it is for you to find or access information about dementia.
We've talked about accessing various resources and information in English/French. We've talked about access to care and support, access to community programs and services for people living with dementia and we've talked about accessing information related to dementia.
Before I let you go, is there anything else you believe I need to understand regarding your access to information, resources or support related to dementia in English/French?
Thanks again! The team that invited you to participate in this session will contact you regarding the manner in which you can receive the incentive we promised you.
Thank you – have a nice evening!
This refers to the participant's preferred official language – reference will be made to English for participants in Quebec and French for participants outside Quebec.
Public Health Infobase. Canadian chronic disease surveillance system data on dementia, excluding Saskatchewan and Yukon. Government of Canada. 2018; https://health-infobase.canada.ca/ccdss/data-tool/
Public Health Agency of Canada. Dementia in Canada, including Alzheimer's disease: Highlights from the Canadian chronic disease surveillance system. Government of Canada. 2017; https://publications.gc.ca/site/archivee-archived.html?url=https://publications.gc.ca/collections/collection_2018/aspc-phac/%20HP35-84-2017-eng.pdf