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Navjot Gill, University of Waterloo

When care partners of older adults first encounter symptoms of dementia, many assume the symptoms are a normal part of aging. This lack of knowledge needs to be addressed to facilitate the first step in seeking dementia care.

Things can get even more complex for care partners living on the margins of mainstream Canadian (English and French) health-care services. As a first-generation South Asian in Canada and a doctoral student engaged in dementia-related research, I still struggle with translating and explaining what dementia means to my parents since my grandmother’s diagnosis.

South Asians comprise what Statistics Canada reports is the country’s largest “visible minority group,” at 5.6 per cent of the population. That means South Asians also make up a significant portion of the 747,000 Canadians living with Alzheimer’s or other dementia.

South Asians — people who are either born in or who can trace their ancestry to South Asia, including India, Pakistan, Bangladesh, Sri Lanka, Bhutan, Nepal and the Maldives — are an ethnically diverse group with socio-cultural norms that influence their experience of living with dementia. They may also encounter specific barriers to care including language, perceived stigma regarding dementia, lack of knowledge about available services, and hesitancy to use those services.

The process of getting care for people living with dementia can be broadly divided into three stages: recognizing the symptoms, seeking a diagnosis and using various services to access the care needed to maintain quality of life.

Recognizing symptoms

Portrait of an older South Asian man wearing an off-white shirt
A diagnosis of dementia involves several steps, including a visit to a family physician, referral to specialists, and physical and mental tests. (Pixabay)
The first step of recognizing symptoms is in itself a significant barrier. In a study conducted in the United Kingdom, most South Asian people living with dementia and their care partners acknowledged their lack of awareness and knowledge of dementia. They did not know the signs and symptoms of dementia before the diagnosis.

The study also found beliefs play a significant role in how the symptoms of dementia are perceived. These include associating dementia with a punishment by God for prior sins or dementia as a medium through which the connection with God is deepened.

An abundance of information about dementia is available from organizations across Canada, but limited information is available in multiple languages. While almost all (93 per cent) South Asians in Canada can carry on a conversation in English or French, 46 per cent do not use English or French at home.

Access to information in multiple languages that goes beyond the basic definition of dementia and its symptoms, and that includes information on local resources, could help raise awareness and encourage people to seek diagnosis.

Seeking diagnosis

There are various steps before receiving the diagnosis of dementia. These include a visit to a family physician, referral to specialists, and physical and mental tests.

Navigating the health-care system can be a daunting experience, especially if the individual lives with dementia and has a language barrier. The multiple visits to a doctor’s office may require a family member who can speak English to help with translation. The same individual may not be available for each visit, disrupting communication.

After diagnosis, access to appropriate services is crucial to maintain the quality of life for people living with dementia and their care partner. However, most of these services are offered in English or French and embedded in western culture. (Shutterstock)
The experience of receiving a diagnosis is emotionally draining and challenging. It falls on the family member to disclose it to their loved ones as a translator, which causes emotional stress for both parties.

Another issue is describing dementia in a language aside from English, as not every language may have a word for dementia.

Services such as having translators present, better policies to provide financial security for care partners who have to take multiple days off from employment, physicians having an understanding of the socio-cultural norms and the perception of dementia within the community may be a helpful starting point to make the experience of seeking and receiving dementia more inclusive to the South Asian community.

Access to services

After diagnosis, access to appropriate services is crucial to maintain the quality of life for people living with dementia and their care partner. Across Canada, multiple organizations provide such services.

However, most of these services are offered in English or French and embedded in western culture. Social and recreational services often include bingo, line dancing and discussing western art and literature, which may not be inviting or appropriate to a person living with dementia from the South Asian community.

Support groups for care partners may be a challenge due to the cultural differences in providing care for the elderly. In western culture, a move to long-term care is often the final stage for care partners to ensure their loved ones are safe and cared for.

This is a difficult conversation in South Asian communities where filial piety plays a significant role, and long-term care homes can be viewed negatively. The financial responsibility associated with long-term care may also be a factor for some families. In this way, home care becomes an integral part of dementia care in the South Asian community.

To ensure a comfortable stay within the community, services need to be more culturally inclusive in terms of content and structure of the services, the language of delivery and culturally appropriate advertisement of the available services.

To help improve the lives of South Asian Canadians living with dementia and their care partners, it is time we take steps to ensure Canada’s mandate for diversity and inclusivity are reflected within our health-care system.

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( From : The Conversation)

Dr Nirmal Kandel @kandelnirmal

“Heaven is a myth, Nepal is real“ and “Heaven is myth, Nepal is real“ these phrases have been in use since 2016. However, the phrases became popular when Nepal started the Visit Nepal 2020 campaign in 2019. Many authors, tourists, travel enthusiasts, and bloggers use the phrases with or without ‘a‘ for myth.

Since last year, I started using this phrase in my everyday tweet with one of the fascinating pictures of Nepal available on social media. The primary objective is to promote Nepal tourism in my networks. The expected outcome is to get the attention of some of my foreign friends and colleagues to plan their vacation in Nepal. If two or three families visit Nepal every year, there would be a positive contribution to our tourism industries. All I have to spend is around 1000 minutes in a year to tweet. Imagine, if 2 million Nepali managed to influence at least one or two families to travel to Nepal, we will receive almost 8-12 million tourists every year and not to forget that it can have a snowball effect in the long run. There are many challenges due to the COVID19; however, we may reach our required targets with our collective effort one day. If we can contribute to our economy, even if it is a cent or millions, that can make a huge difference.

Since I started posting it, I noticed some interest. A few colleagues and friends told me they plan to visit Nepal very soon. Nirmal, “the pictures you post are magnificent“, and many asked me the best months to visit too. So I will consider it successful when they visit. However, few compatriots in social media started mocking the phrase without understanding the meaning of ‘Myth“. A few posted pictures of potholes, ravaged roads, and comments that the lives of mountains and hills are difficult with the tag “Is Nepal a heaven“? Many of us know that social media are sometimesnotorious but ignoring such messages is the best solution.

I found some of the best-supporting tweets thatexplained that no one had seen heaven. We do not know what heaven is, but Nepal is real. The “real‘means natural and not mythical. Oxford defines a myth as “a traditional story, especially one concerning the early history of a people or explaining a natural or social phenomenon, and typically involving supernatural beings or events“ or “a widely held but false belief or idea“. I do not want to compare our country with that traditional story and false idea.

This article will not describe anything on why one has to visit Nepal. But we have to inform the world that itis not only a country of Himalayas and the birthplaceof Buddha; it has so much to offer. For instance, rich cultural heritage, distinct arts, cultures and festivals of indigenous and ethnic groups, wildlife parks with varieties of exotic birds and animals, mouthwatering traditional cuisines and drinks, adventure sports (rafting, biking, jumping, gliding, etc.) and religious tourism for Hindus and Buddhists. Every district of Nepal has a few attractions, and we need to identify, develop and promote them.

Nepal is not heaven; it is real, and that‘s why our tourism practices and industries are evolving in reality. These days, our tourism enterprises are also friendly to local tourists, which was not the case in the past. One of the silver linings of the COVID19 pandemic is the increase in domestic tourism. As a result, local touristsstarted to recognize that their side of the fence is green. Recently, I was in Pokhara with my family and what I noticed was entirely different from the pre-covid erawhen the entire city was full of foreigners. This time, the city was not empty, and tourists were there, but around 80% were Nepalese tourists and a few Indians, Chinese and the rest of the world. I noticed a paradigm shift in behaviour and attitude of the tourism enterprises, who were rarely friendly and respectful tolocal tourists in the past are warm and welcoming. Iremember that they only preferred foreigners andbehaved rudely to many local tourists. These days, probably money talks, locals spend more money on tourism than foreigners. I do not blame these enterprises, but local tourists also need to maintain hotel etiquettes, respect tourist services, and supportmaintaining tourism sites.

“Heaven is a myth, Nepal is real“ is no longer to promote only international tourism but also to promote local tourism. Many of us are not aware of all the attractions in the country. We have a shared responsibility to share pictures, events, videos, infrastructures, attractions and articles from districts, provinces or villages that can inform and attract local tourists. In addition, this can help the government and tourism industries to prioritize developing the required infrastructure for tourism. There are plenty of opportunities and attractions that the country can cashon. Take an example of Chandragiri Hills, once not known for many is a popular destination because of Cable Car. The tourism business is evolving, and we need to promote luxury tourism to develop the required infrastructure and facilities. Opening two new international airports, the chains of star hotels in cities,homestays, new tourism sites, and events with the reflection of cultural practices and adventure sports are up-and-coming for the tourism industries. We should maintain the quality of these attractions and services to promote luxury tourism, where tourists can spendthousands of dollars. Let us explore our own country’s attractions before exploring the rest of the world. Each penny we spend contributes to our local economy.

Dr Kandel is a medical epidemiologist and anthropologist based in Geneva, Switzerland