Embracing Cultural Competence whilst Changing the Conversation on Dementia
By David Paulson © 2018
“Cultural competence is about our will and actions to build understanding between people, to be respectful and open to different cultural perspectives, strengthen cultural security and work towards equality in opportunity. Relationship building is fundamental to cultural competence and is based on the foundations of understanding each other’s expectations and attitudes, and subsequently building on the strength of each other’s knowledge, using a wide range of community members and resources to build on their understandings.” Educators’ Guide to the Early Years Learning Frameworkp21; Educators’ Guide to the Framework for School Age Care, p57.
I had just finished presenting on a panel discussion at a Dementia conference. A tall, jovial middle-eastern man in his 20s approached me. We chatted and found we could talk on many topics, so we went for a walk-and-talk. The topic being dementia, and me knowing utterly nothing about his home country, I opened the door by telling how my family handled my paternal grandmother’s senility, and later my Dad’s Lewy Body Dementia.
My grandmother was in her 90s in 1979 when she was abruptly taken from her farm where she’d lived alone since my grandfather’s premature death in 1960. No one explained anything to her or asked what her wishes were. She was tucked away in another city in a nursing home where no one would see her and “embarrass” the family, and that was my parents’ generation’s goal.
To continue the conversation with my acquaintance from a part of the world about which I know absolutely nothing, I simply asked how many first cousins he had, first stating I had 9, they mostly lived within an hour’s drive and I knew all their families.
He threw his head back and had a good laugh. “My family would fill this convention center, and where I’m from - we’re ALL related in some way. I know of over 120 first cousins!” Since my partner passed away during the AIDS epidemic and our foster sons are in their early 40s now and I’ve not had contact with them in years, I have no family other than my birth family and relatives. He found that tragic and shocking. “How do you not kill yourself from loneliness?” I was aghast at his question and fell silent.
In Armistead Maupin’s Tales of the City (1976), Michael Tolliver famously confesses to his hippie friend Mona, “All I really need are five good friends” while he fails over and over (and over) again to find true love. That is part of our culture - many find love in their close friends, forming close, enduring families of friends.
My new acquaintance couldn’t begin to wrap his mind around that, he being from a clan-based culture. So this was the opportunity to ask him if he had any relatives with dementia. I mean, with all those relatives, there mustbe at least a few! He said, “well of course there are some. But you’ll never know who they are. We surround them like the leaves of a head of lettuce, care for them and make sure they live with dignity.”
“Yes, but are their individual rights respected? Are they allowed freedom?” He tut-tutted me the way someone with a British-English accent does.
“You’re trying to understand this through American sensibilities. Turn that off and see through them through my eyes. We never discuss it - we just know they’re losing it, and we deal with it.”
And then he didn’t want to talk about that or anything else any more, politely bade me farewell before we even introduced ourselves strode off and hopped in a taxi.
As of this writing, Dementia Alliance Internationalis active in at least 47 countries and several languages. Our first barrier is the concept of the “Support Group.” Most countries only understand a support group as being AA, and some non-alcoholics in many countries would find it pretty disturbing to sit around at spill one’s guts to other human beings - and have that accomplish anything. But today it is a widely accepted model for recovery in the U.S..
In mental health, vastly fewer support groups exist for persons with mental disease, especially those with severe mental disease. For example, those with schizophrenia, are often not expected or trusted to be able to think or speak for themselves - many are homeless or imprisoned. Support groups that do exist are for the poor families and caregivers who “suffer” silently at their sides (sarcasm). The concept of support groups for persons with any form of Dementia when DAI was first established first was shrugged off, then roundly criticized and now is become an emerging model of living well with Dementia.
For this model of living well with Dementia to continue to proliferate, it can only do so in a context of continuous building of cultural competency. As s DAI embraces persons and groups from other cultures/languages, keeping in mind that a different language is inextricably related to another culture, and not all people who speak a language share a particular culture.
My sister and I visited her friends in Liverpool years ago. I am a polyglot, but I could scarcely understand a word they said, nor they I. They understood my French better than my English. How is this anecdote relevant? For our online support groups to continue to grow in other languages and cultures, we must ask the right questions relevant to others’ cultures and technologies before we begin to extoll the many benefits of DAI.
For example:
- Do you have access to a device that can broadcast and stream video/audio? Netbooks & tablets start at around $140, have cams and mics. Smartphones are more.
- Do you have wifi accessible that supports streaming video?
- Is there a quiet place you can use your device privately to stream a chat with others?
- Will your family permit you to speak freely online to a group of people who also have dementias?
Culture is: technology, expectations of conduct (profanity, clothing, topics like politics or religion, cross-talk[1], expression of anger/disgust, taboo topics, observations of religious and civic holidays, etcetera), and certainly how much one discloses in a support group.
For example, in my case I was brought up not to disclose how I feltabout something; that was vulgar. One of my grandmothers was born in the end of the Victorian age in 1894, so she held those values firm. We all have some core values that have more to do with our respect for those who raised than our own beliefs. Those are simply part of our families’ cultures.
DAI does not seek to change other’s cultures. Rather, we endeavor to continuously better acculturate ourselves to persons with dementia from throughout the world. Many of our support groups are cross-cultural. Some are even cross-linguistic as we share the common goal of living well with differing dementias.
It is my personal goal to continue to integrate persons with dementias from cultures speaking the Romance family of languages as I am a Romance Linguist. Many of us who are monolingual are “fluent” in understanding other cultures, ready and able to create a conversation about Dementia which will be of continuous benefit to persons from many diverse cultures. In our support groups, we:
- open new channels of Communication, respectful of
- diverse Cultures, making
- new Connections among persons with dementia and support agencies, often making
- Comparisons among ourselves despite the distance, boundaries and languages that divide us, and forming
- newCommunities of support, fellowship, laughter, friendship and love.
We do all we can to live well with dementia.[2]
Consider donating to DAI to help support our online Support Groups as we continue to grow throughout the world, fighting the one thing about Dementia that most cultures share: Shame of having a family member with dementia, their forced Isolation and lack of Support and Protection for those living with the disease and their caregivers.
[1]Persons from an Alcoholics Anonymous or a similar background tend to reallyhate cross talk. In AA, everyone gets a turn, and when everyone has finished, then you may have a 2nd turn if there’s time, but you don’t talk back and forth or you are immediately scolded.
[2]Adapted from the World Readiness Standards developed by the American Council on the Teaching of Foreign Languages.