Navigating Alzheimer’s Disease and Other Dementias: Resources for multicultural communities

Lindsay Nielsen

Reprinted from "Immigrants and Refugees" issue of Visions Journal, 2010, 6 (3), p. 24

Alzheimer’s disease is a progressive and degenerative brain illness. This means that it causes changes in your brain that cannot be stopped. These changes in the brain significantly impair thinking and memory, cause mood and behavioural changes, and impact daily functioning (see sidebar on warning signs).1

About 70,000 British Columbians are currently living with Alzheimer’s disease or a related dementia.2 These conditions, which affect people from all ethnic backgrounds, pose a significant—and growing—challenge. Nearly 10,000 of these people living with dementia are under the age of 65.2 In the next 30 years, the number of people affected by dementia in BC is expected to more than double.3

The Alzheimer Society of BC reaches out to all British Columbians who are living with the disease, as well as their families and friends. The society delivers support services, education programs and information throughout the province, and funds research for a cure.

Starting the multilingual ‘conversation’

Receiving a diagnosis of Alzheimer’s disease or a related dementia can be an overwhelming experience, and it can have a large impact on family and friends. Individuals affected by the disease report feeling a range of difficult emotions including fear, anger, sadness, embarrassment and disbelief. Reactions to such unwelcome news often include different phases, which are frequently experienced and re-experienced in any order. Phases of shock and numbness; disbelief and denial; anger and frustration; sadness; and acceptance are all common.

As Ruby Ng, director of marketing and communications for the Alzheimer Society of BC, points out, many people don’t seek help for Alzheimer’s disease or a related dementia. They don’t realize that it’s not a normal part of aging. Given the challenges associated with the disease, seeking help is an important part of accepting a diagnosis and moving forward.

Ng notes that stigma surrounding Alzheimer’s disease and other dementias can prevent open discussions about the illness, get in the way of understanding and interfere with accessing resources. People faced with these challenges may be unwilling to talk about the diagnosis because it undermines their feelings of self-sufficiency and control.

For non-English speaking populations, the challenge of getting help can be even harder, because most resources and services are designed for an English-speaking population.

In May, the Alzheimer Society of Canada launched its national awareness campaign, “Forget Everything You Knew,” to raise public awareness and understanding of the disease. The campaign has produced television ads in Arabic, Chinese, English, French, Italian, Punjabi, Spanish and Urdu.

The Alzheimer Society of BC, mindful of the ethnic diversity of BC’s population, is working to build connections with multicultural communities. Its educational resources, in print and online, are provided in Chinese, English, Japanese, Korean, French, Persian and Punjabi, Japanese and Korean. It also operates the Chinese Resource Centre in Vancouver.

The Chinese Resource Centre

Based in Vancouver, the Chinese Resource Centre provides the Alzheimer Society education programs and support groups in both Cantonese and Mandarin.

According to Ng, family members are often the first ones to ask for information and support. The centre offers the Chinese Families Caregiver Education Series for family members and informal caregivers. The two-day series consists of two seven-hour sessions in which participants are provided with information on Alzheimer’s disease and related dementias, useful communication strategies, tips for understanding changes in behaviour, community resources, stress and grief management, as well as advocacy and legal issues. This information series is made available whenever there is enough demand for it. At least 10 participants are needed to run a series.

The centre also organizes a Chinese Public Forum during Alzheimer’s Awareness Month each January. Additionally, it conducts public information sessions on Alzheimer’s disease, related dementias and brain health in various Chinese community centres and churches throughout the year.

Vivian Lam, support and education coordinator at the Chinese Resource Centre, notes that within the Chinese community there is often a lot of stigma associated with a diagnosis of Alzheimer’s disease. She says that in Chinese culture, self-reliance is highly regarded, which means that many Chinese people don’t want to ask for help when faced with Alzheimer’s disease or a related illness.

Lam believes the stigma surrounding the disease is stronger in the Chinese community than in the English-speaking community. Many Chinese people feel shame at talking about painful emotions and revealing their struggles to other people. Lam points out that when a Chinese family member is living with the disease, the affected individual, and his/her family, will often try to hide this information from friends and other relatives.

Given this context, the support groups at the Chinese Resource Centre provide an important network of support for members of the Chinese community. Lam says that in the groups, members feel safe sharing their struggles. She has seen an increase in the willingness of Chinese patients and families to discuss issues with peer groups and health care providers.

The centre offers a social support group for people in the early to mid stages of dementia. It also provides caregiver support. Support group facilitators and other staff provide the support groups with additional information in the form of brief presentations, information sheets and newsletters.

The facilitators are volunteers who have undergone an intensive training course offered by the Alzheimer Society. Many of the facilitators are former caregivers, and they often have backgrounds in nursing or social work.

Caregivers need support too

It can be very challenging to be a caregiver—whether a spouse, other family member or friend—of a person living with Alzheimer’s disease or a related dementia. The physical and emotional demands of the disease can make it hard for caregivers to stay connected to family and friends, which can then set the stage for isolation and loneliness.

The Chinese Resource Centre’s caregiver support groups provide a space where members can:

  1. Exchange information and form friendships with others affected by dementia.

  2. Access the most current information.

  3. Learn and share practical tips for coping with change.

  4. Decrease feelings of loneliness and isolation.

  5. Express feelings and be reassured that these feelings are normal.

  6. Find a sense of hope.

Caregiver support group members draw on the experience and support of other members more than on the knowledge of staff. The principles of such a model are:

  • All members of the support group are equally respected and valued.

  • The group is based on people talking as equals instead of being lectured to by an expert.

  • Members are encouraged to take an active role in the group to ensure that all the necessary tasks are carried out. Tasks may include welcoming group members, making coffee and reminder phone calls.

The Chinese Resource Centre’s caregiver support groups help members talk about the work they are doing, increase their feelings of competence and emphasize the importance of self-care. Lam says that members have expressed that the groups provide them a place where they feel understood and connected.

Conclusion

Accepting a diagnosis of Alzheimer’s disease or a related dementia requires access to a network of supports to better understand the disease and develop helpful coping strategies. As the statistics show us, there will be many more people navigating this journey in the days ahead.

 
About the author

Lindsay lives in Vancouver

Footnotes:
  1. BC Partners for Mental Health and Addictions Information. (2010). Alzheimer’s disease [factsheet]. Vancouver, BC: Author. www.heretohelp.bc.ca/publications/factsheets/alzheimers.

  2. Alzheimer Society of British Columbia. Disease statistics. www.alzheimerbc.org/Alzheimer-s-Disease-and-Dementia/Disease-Statistics.aspx.

  3. Alzheimer Society of British Columbia. (2010, January 4). A rising tide of dementia in BC [press release]. www.alzheimerbc.org/getdoc/48e51855-3589-48b5-a806-d12ae4016a85/Awareness-Campaign.aspx.

 

 

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