This is a story of the power of bringing in volunteers from specific cultural and faith backgrounds to ensure that this aspect of people’s unique identity is recognised and celebrated.

It’s 10:15am in the Goreway Resident Home Area, at Peel Manor in the Region of Peel, Ontario, Canada. 

Zelia, a volunteer arrives and tells me she is leading a Portuguese Rosary Group which she does weekly.   She tells me that her mother used to live in the home seven years previously, she lives across the street, and she likes to help now; “They often go back to the mother tongue, and it must be frustrating when no one understands them. Even if one person responds, it’s worth coming!”

Eight Portuguese people living in the home are helped to go into the light Atrium space of the home, where Zelia has set up a table with a red cloth, a cross and a picture of ‘Senhor Santo Cristo Dos Milagres’ which sets the scene.

The individuals in the group look much like many people living in care homes.  They are sitting in wheelchairs, some are living with dementia and initially all seem quite quiet, sleepy and reserved. My colleague and I are invited to observe and wonder how this one volunteer will be able to reach and support all these people with a range of different needs.

Within moments, everyone is holding their Rosary beads and Zelia starts to recite the prayers in Portuguese.

It is as if a light goes on in the room.  The familiarity of the words, shared during so many Sundays over so many years in their lives and the rhythm of the woman’s voice is like magic – waking everyone up in the room, and somehow restoring their status as individuals.  Although they are in wheelchairs, it feels as if they are standing tall in the presence of their God.  Gradually each person joins in with the prayers.  There are moments when Zelia forget some of the words – she tells me that she is a bit rusty with knowing all the prayers. But this is like a gift to her group members as some of the older adults just step in and take a lead – they know the words well! They are proud to lead again! Religious songs follow and there are people with beautiful voices, whose sounds lift to the heights of the sky in the Atrium like angels.  

I am not Portuguese.  I am not a Catholic. I do not understand any of the words. However, I feel completely connected with this spiritual experience and it moves me deeply.

Once the Rosary is completed, Zelia invites some general chat in the group.  The atmosphere is both animated and relaxed.  She tells me that this part of the group is appreciated just as much as the formal side of the worship, much as many people enjoy the social element of the church. I do not know the content of the conversations, but it feels like the weather, politics and the general state of the world might be involved!  She skilfully involves each person in the group. I no longer see the wheelchairs, the grey hair, the LTC ‘resident’.  They are a group of friends, who enjoy sharing their language and their faith – and perhaps, even more importantly, feeling seen and heard again.

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“English people are really bad at talking about feelings.”   “Eastern Europeans often talk in a very abrupt way.”  “Filipino staff are always kind and hard-working.” “Indian nurses are very reserved.”  “West Africans talk very loudly.” “Australians are very brash.” “Canadians are always lovely and polite.” “Gay men are so camp.”

How many of these comments have we heard or even thought ourselves?  Cultural generalisations and stereotypes are very much still out there.  We rightly challenge them as the notion that everyone from England can’t talk about their feelings, or people from all the Eastern European countries can be lumped together in one big group as ‘being abrupt’ is at best unhelpful, and at worst rude and rooted in prejudice.  Even the ‘positive’ stereotypes, for example about Filipinos or Canadians make huge assumptions and set high expectations!

However, stereotypes are often based on evidence or experience that there are certain qualities which are regularly associated with particular countries.  These are based on cultural norms that can be seen in many people from those places – even if there are many others who don’t conform to those norms.   Although I’m English, I consider myself as very open in talking about feelings, and my Nigerian brother-in-law isn’t ‘loud’ at all, for example.

I have recently had the privilege to witness amazing multi-cultural teams working in care homes in Canada, Ireland and the UK.  In one of our Butterfly Homes, there were over sixteen different nationalities and languages spoken.   This has generally brought a wonderfully vibrant energy to the homes, but has at times created some communication issues and a few cliques.

Do we talk enough about some of the challenges that integrating people of so many different ages, cultures, faiths and sexualities into one ‘big family’ as is the goal of a Butterfly Home?  Perhaps we are sometimes fearful of talking about these things for fear of being perceived as racist?

Reflecting on how others see us

I hadn’t considered much how I might come across to others, but in a recent visit to a care home in Toronto, my usual very chatty and bubbly style didn’t seem to go down as well as it often does. I felt an underlying mistrust and even hostility I hadn’t encountered before, which was unsettling.  In this home the staff team are predominantly black and Asian workers who have emigrated to Canada from all parts of the world.  A very open manager in the home said to me, “They are not used to an older, white, posh-speaking woman from England telling them what to do!” This gave me pause to reflect that being seen as ‘white’ and ‘English’ and ‘posh speaking’ gives me privilege which to some might be quite threatening or even alienating.  What could I do differently to earn this team’s trust? I didn’t feel I was ‘telling them what to do’, but that was how it felt to them and no wonder, with England’s colonial history?

Exploring common challenges in culturally diverse teams

These are some of the difficulties I have witnessed over the years, which I’m keen to put out there in the open, so we can talk about them more:

• Groups of staff from the same country understandably will gravitate towards each other and talk in their own language.  This can make others feel excluded, even if this is not usually the intention of the people who are talking.
• In some parts of the world, giving eye contact to an older person is considered disrespectful.   When training teams on best practice in communication, we can talk about this and stress that for many Caucasian adults living with dementia, eye contact can be very helpful.  This might be something that some workers will struggle with, but self-awareness and a willingness to adapt are important.
• Team members do need to be aware of how abrupt or loud they might appear (whatever part of the world they come from) and be prepared to reflect honestly on how this might be experienced by those they support.  Peer feedback in a safe environment can support people to be more aware of their ‘style’.  We obviously don’t want people to change fundamentally who they are, but all of us need to be able to modify our approach in different contexts.   
• Some team members from different parts of the world might find it harder to initiate conversations or be familiar with references relating to the history, music, food and other key topics linked to those of the ‘majority culture’ in the home. Curiosity to find out more and to listen and learn can be a helpful start to addressing this.
• Lack of confident spoken English conversational skills can present a real barrier – especially when talking with people with cognitive impairments and/or hearing problems.  Are there ways of offering more English-speaking classes for people who would like them? (an in-house TEFL teacher, for example?)
• A key part of the Butterfly philosophy is for team members to share photographs and stories about their own lives e.g. children, pets, weddings and holidays.   Nurses trained overseas might have learnt to behave in a much more formal and ‘professional’ way, so this won’t necessarily come naturally to them.  Interestingly, in a Butterfly care home in Devon in the UK, a nurse from India who is pregnant, is now sharing more of herself related to her pregnancy and gaining advice from people living in the home about childbirth, looking after babies etc.   This is a great example of how people can change and learn.
• How well are we supporting those living in the care home who don’t have English as a first language?  What must it be like to never hear your own language spoken?
• How emotionally safe do gay, lesbian, trans or bisexual people feel about being open about who they are? What happens if there are team members from cultural or faith backgrounds who are uncomfortable with LGBTQ people?

Why is it important to talk about some of these things?  By acknowledging the issues, we can start to put in place some support strategies to help address them.

Teaching teams about specific cultures and eras

Many years ago, a theatre company of older people called the Good Companions, led by Pam Schweitzer created a play for the turn of the new century in 2000 which told the everyday stories of older adults who had lived through the 1940s, 50s, 60s and beyond, based on the reminiscing of the older actors themselves.  It was a glorious insight into home life, wartime, raising children, entertainment and lots of other experiences from those years.   We used this play to train a diverse team in a care home in Kensington and Chelsea to give them greater understanding of the backgrounds and lives of the people who were living in the home at that time.   The teams who participated in these sessions were inspired and moved by the stories they heard.  What was particularly touching was that although they learnt a lot about the distinctive experiences of the white British Londoners in the stories, many of the staff from Ghana, the Caribbean and other parts of the world reflected on some of the themes which were actually very similar and relatable to their own families’ stories.

What unites us is so much more than what divides us.

Ultimately, this is perhaps the biggest goal when creating ‘family’ – to celebrate our differences, to let each other know what we need to feel a sense of safety and belonging, but also to remember that our shared humanity is the glue which will ultimately hold us all together.

What has your experience been of talking about these vital and sometimes personally confronting topics?

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This reminded me of the many people I have met in care homes over the years whose first language isn’t English.  As many people are aware, the course of dementia can lead people to revert to their first language and lose fluency in their second language which has been learnt later in life so is less embedded in the brain.   I frequently meet people who talk very animatedly in their own language, expecting an appropriate response. The best we can do is to guess the general mood of the communication in the facial expressions and body language, nod to indicate we are listening and respond kindly in English.   This often feels very inadequate and I wonder how frustrating this must feel for the person having this rather minimalist response day in day out.  If that person has infrequent visitors from family or friends, then you can only imagine how lonely it must feel.   As the Alzheimer’s Society says, “Language is a fundamental part of our human experience.” 

Lack of knowledge of someone’s mother tongue can also make it difficult to do a meaningful assessment of a person’s cognitive abilities. It might be easy to assume the person has less insight and ability than they actually have, because of the limitations of verbal communication. 

In one care home in Hamilton, Ontario, Canada, I met an Italian woman in the home.  As far as I was aware, there were no staff at the time who spoke Italian. I speak reasonably good Italian, so I was able to greet her and continue a conversation with her.  I will never forget the woman’s face when I spoke in Italian.  She lit up with a huge smile and there was a tear in her eye.  She kept repeating the words “Bella donna” (beautiful woman) whenever she saw me throughout the afternoon.  The team members told me they rarely saw her so alive and animated.  What had I given her?  The simple but huge gift of her mother tongue being heard and understood.

Many teams do their best by using Google translate or by learning key words in the person’s language to convey specific messages, but this is often in relation to a task such as offering food or helping someone during personal care.   Whilst a good start, this really doesn’t replace the opportunity for a real conversation with someone who speaks your language fluently.

What can we do to improve the plight of people who find themselves in the situation of being culturally isolated in this way?  Actively recruiting staff or volunteers from the same country is one possibility.  We might need to be creative about how we do this, for example trying to connect with a local community group from that nationality, whether Italian, Polish, Hindu-speaking etc.   There may be possibilities for the person to go out of the home on a regular basis to join that community or for someone to come in and befriend them.

How well are we doing with this?  Do we know people we support who are in the situation of rarely hearing their mother tongue spoken and never feeling that they are truly understood?  This must surely be a fundamental part of the essence of person-centred care. 

We can and must do better!

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What does it mean to forget, to lose words, thoughts, images of our lives, not recognise the people we love and who love us? Is a pathway towards the end of our lives embedded within us via faith or nature? How do we truly support a culturally diverse and inclusive spiritual health for people living with a dementia.

Humanity and the link between spirituality and our core spirit is one well explored. It is linked to our soul and the nurturing of it. Our Soul, that part of us that observes quietly behind what we do, think, believe, and feel. For each of us, our Soul is where unconditional love, unending forgivingness, compassion, harmony, peace, and joy reside. This has to be the foundation of our approach and application of spirituality in care. We are Spiritual Beings having a human experience.

“We are, not metaphorically but in very truth, a Divine work of art, something that is in the making, and therefore something with which we have a certain character that is ever changing and ever present”.

C S Lewis

What is spirituality?

Spirituality is an evolving concept. There are two extremes to the definition of spirituality; both approaches acknowledge a search for meaning. For some people, divine presence is central; for others, spirituality is inner life, personal belief and focussing on self. Regardless, both beliefs are important in understanding the core spirit within each of us.

Spirituality is a complex array when we consider:

1. Spirituality as part of a religious belief: A particular spirituality is a specific system of beliefs, virtues, ideals and principles which form a particular way to approach God, and therefore, all life in general.
2. Spirituality as a secular concept: Spirituality are those ideas, practices and commitments that nurture, sustain and shape the fabric of human lives, whether as individuals or communities.
3. Spirituality as a metaphor for absence: By raising the importance of meaning, purpose, hope, love or relatedness issues when living with dementia and other problems linked with ageing, the language of spirituality identifies gaps and ideological differences often creating conflict.  This in itself can reinforce our spirituality as an expression of absence or inadequacies.
4. Spirituality as a search for meaning: Spirituality recognises the human need for ultimate meaning in life, whether this is fulfilled through a relationship with God or other expressions that reaffirm our beliefs, values and feeds our soul/core spirit.
5. Spirituality as life being lived: Spirituality refers to the deepest values and meanings by which people seek to live… it implies some kind of vision of the human spirit and of what will assist it to achieve full potential.

“Do not be fooled by its commonplace appearance. Like so many things, it is not what’s outside, but what’s inside that counts” – Aladdin

Supporting Spirituality | How it looks, sounds and feels?

Not one approach can satisfy this need yet, it is essential to nurture the soul and spirit of all of us.  Supporting spirituality for people living with a dementia is challenging, intertwined with culture, diversity, story and our core spirit, there is not one size that fits all.

Spirituality needs nurturing by:

• Using the senses  
• Rituals and iconography
• Understanding spirituality is not religion 
• Recognising our spirituality changes
• Understanding stages of dementia impact our experience of spirituality  

Practical approaches to support a diverse spiritual experience

The creative arts

The arts – music, dance, painting, drawing, poetry, writing, sculpting, theatre, craft, embroidery, flower arranging – take us away from everyday routine and fulfil the spiritual need for creative expression.

Example activities might be:

• Listening, moving or dancing to music
• artistic expression 
• Writing simple poems together or making up stories
• Singing, reminiscing through songs 
• Stories being shared 

These can be built around creative interests the person has enjoyed in the past.

The wonders of nature

Many people respond to and feel spiritually fulfilled by nature. They love the great outdoors, smelling the aroma of blossoms, hearing bird calls, working with the soil, seeing and touching various things that are linked to the experience of nature.

Other wonders of nature activities might include:

• Watching and listening to birds
• Looking at a sunset or the stars
• Garden activity 
• Walking or sitting outside 
• Doing nature themed crafts such as flower pressing, gardening 
• Growing plants indoors
• Connection with animals 

What you choose to do will depend on the person’s capabilities – but supporting the senses through nature can be very meaningful.

Friends, family and community

Retaining feelings of connection with friends, family and the community is an important part of a spiritual life. These are the people who share similar traditions, beliefs and values.

Examples are:

• Doing simple one-to-one activities with available family members such as flower arranging, enjoying listening to music, looking at old photographs of family celebrations, singing along to favourite songs, etc.
• Celebrating different special times such as Easter, birthdays, anniversaries, grandchildren passing exams, the arrival of spring, etc.
• Many opportunities can be created for two or more family members to get together and in which your loved one can take part and which encourages communication.

Invite the person’s friends and acquaintances to some occasions or organise the event especially with them in mind.

Faith based activities

Support from the faith community is important for religious expression. The faith community may have volunteers who visit those who are homebound and carry out the rituals.

Other things you could organise may include:

• Watching a religious service, rituals or occasion on TV or the internet
• Visiting the place of worship when the building is quiet and just sitting silently in contemplation
• Listening to religious recordings
• Reading or listening to faith readings
• Making sure the person has religious or cultural items near to hand where they can see and touch them

Sensitive and compassionate care that includes those elements of spirituality which have meaning and significance to your loved one is essential in maintaining their well-being. Even if you might not share their beliefs they have the right to the comfort of them. Ensuring they are part of daily routines and activities will also make caring for them so much easier and enjoyable.

REFERENCES 

King U (2011) Can spirituality transform our world, The Journal for the Study of Spirituality, 1, 17-34

Mackinlay E and Trevitt C (2010) Living in aged care: Using spiritual reminiscence to enhance meaning in life for those with dementia, International Journal of Mental Health Nursing, 19, 394-401

Mowat H (2004) Successful ageing and the spiritual journey, in A Jewell (ed) Ageing spirituality and wellbeing, London: Jessica Kingsley

Swinton J and Pattison S (2010) Moving beyond clarity: Towards a thin, vague and useful understanding of spirituality in nursing care, Nursing Philosophy, 11, 226-237

Ai, A. L., Wink, P., & Ardelt, M. (2010). Spirituality and aging: A journey for meaning through deep interconnection in humanity. In J. C. Cavanaugh & C. K. Cavanaugh (Eds.), Aging in America, Vol. 3. Societal issues (pp. 222–246). Praeger/ABC-CLIO.

Lima, S., Teixeira, L., Esteves, R. et al. Spirituality and quality of life in older adults: a path analysis model. BMC Geriatr 20, 259 (2020). https://doi.org/10.1186/s12877-020-01646-0

Musick, MA & Traphagan, John. (2000). Spirituality in physical health and aging. Journal of Adult Development. 7. 73-86. 

Wynn, M. (2013). Renewing the senses: a study of the philosophy and theology of the spiritual life. Oxford University Press.

Downing, D. C. (2021). The most reluctant convert: CS Lewis’s journey to faith. Wipf and Stock Publishers.

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January 2021 saw the screening of Russell T Davies’ “It’s A Sin” – a drama about a group of young people in the early days of the HIV epidemic living in London during the 1980s.

One character develops HIV-related dementia (not named at the time) – he is locked up alone on a ward – this shocking incident is based on a true event, as are many scenes during the series.

People living with HIV at that time faced huge levels of stigma and discrimination, given labels like:

• Sufferers
• Dirty
• AIDS victims
• Riddled
• Perverts

Some of the conditions caused by damage to the immune system were disfiguring, such as Kaposi Sarcoma (a type of cancer, causing lesions on the skin, including the face); thus, making the person’s condition impossible to hide.

This often led to rejection, discrimination, a sense of isolation and being ostracised.  The series vividly depicts the physical and emotional pain of the time – people dying, abandoned by their families, an overwhelming sense of death and helplessness.

So, what has this to do with dementia?

Growing up at an ‘old people’s home,’ I remember, aged 8, one resident packed up to leave. Confused, I asked why. A care worker explained the woman was going to ‘’Whitchurch’ – as an adult, I learnt this was the local asylum.

The stigma of her dementia meant she was being sent away somewhere to be forgotten (not dissimilar to those with AIDS in the early days). This was around 1976; dementia care has improved greatly since those times. However, I was struck by the comments of a colleague some years ago:

“Care homes shouldn’t be islands of the old.”

It could be argued that people with dementia in 2021, are ‘forgotten in care homes,’ just as they were ‘forgotten in asylums’ back then. Has the stigma truly gone away?

I still visit care homes or hear staff during training refer to people living with dementia as:

• Victims
• Sufferers
• Demented/dementing
• Wanderers
• Biter/spitter/kicker
• Not all there
• Aggressive

These labels often unintentionally cause harm. They serve to characterise a person by their condition or their behaviour. Indeed, what should be supportive care, is described as: feeding, toileting etc.  – almost as if we are ‘doing to’ an inanimate object.

I once overheard a staff member say: “Room 12 needs to be dressed.” Where is the humanity in this? Where is the person?

One label I particularly dislike is “dementia people,” for, like “AIDS sufferer,” it puts the disease before the person, focussing on the negative. A person will have been many things in their life before dementia came along. Why is it still not universal that we use the term: ‘person living with a dementia’?

Language is important. The labels we use to describe others often increase their sense of stigma and shame. Indeed, I would suggest that people often internalise that stigma and it affects their well-being, self-image and self-esteem.

Most stigma comes from a fear of difference, of illness and our own mortality – a way of avoiding our own human sense of vulnerability. However, once we start to ‘other’ people and focus on difference, we risk failing to connect as humans.

Stigma comes in many guises, one of the most obvious is the language that we use to describe others. We can either ‘other’ them and dehumanise them with labels, or we can treat them as equals with dignity and humanity, always remembering that we are working person to person.

In other words: labels are for parcels; not for people.

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Whether in Canada, the USA, Australia or New Zealand, the history of indigenous or First Nations people have been sadly shaped by many shocking examples of exclusion, prejudice and discrimination.  However, it is also important to learn about and celebrate the things we can learn from these cultures which value their elders, the continuity of story from generation to generation and the pride and resilience of people to stand tall, even when others label or stereotype them.  

Sue Olsen, a Canadian friend of mine tells me; “Storytelling or oral history was always a part of my life growing up.  I always knew where I came from and who my people were. It is important to me as it gave me direction and my identity, I am proud to be a Metis woman.”

Sue told me about a book written by a scientist during International Polar Year, entitled ‘Two Ways of Knowing – Merging Science and Traditional Knowledge.’ As the title suggests, it gives weight to traditional knowledge, to the stories that help contemporary scientists understand, in this case, northern climates and northern people, that the elders who pass on the stories matter, it is understood to be relevant in today’s society. 

There are important messages here when we think about how we give more weight to medical knowledge sometimes in traditional health and social care assessments.  When I used to attend multi-disciplinary meetings about a particular person with dementia, it always struck me that everyone listened the most to the psychiatrist who had perhaps only spent half an hour with the person.   The people in the room who knew most about the situation – the person themselves, their relative and possibly a care worker who had known them for years, were not given nearly as much regard or attention.  Yet they were the ones who really knew the intricacies of the story of that person, to help give the very best support.

Interestingly, First Nations storytelling focuses not just on words, but on intonation, vocal and body expressions, pace and all the things to which we need to pay close attention in relating to a person with cognitive impairments.    As Archibald (1997, p.10) said, “Patience and trust are essential for preparing to listen to stories. Listening involves more than just using the auditory sense. Listening encompasses visualizing the characters and their actions and letting the emotions surface. Some say we should listen with three ears: two on our head and one in our heart.”

The telling of stories has long been associated with strengthening identity and belonging.  In Aboriginal cultures, stories of healing can be of particular value as they provide hope and show that healing is possible via a multitude of different pathways.  The ‘Dreamtime’ is the Aboriginal understanding of the world, its creation and its great stories.

When we think about coming to truly ‘know’ a person we are supporting, how often do we ask the question; “What are the stories in your life which are important to you?  What are the stories you would like me to hold dear and continue for you?”

When my grandmother was dying in hospital, she gave me her gold charm bracelet that had many charms which had been given to her over about 50 years by special people in her life.  There were giraffes and elephants from Kenya where she had spent time, a Maori ‘hei-tiki’ made from pounamu and many other treasured gifts.  I will never forget her quietly talking me through the story of each charm.  She was very weak, but determined to share each one with me.  She was literally and metaphorically handing me her story because she trusted me to take care of it for her once she was gone.

Not everyone has somebody in their life who will be there for them near the end of their lives to honour their story.  But everyone of us who supports a person in need can learn to listen with our heart as well as our ears, know that each and every story has meaning and significance and deserves to be witnessed.

References and further reading:

Archibald,

Archibald, J. (1997). Coyote learns to make a storybasket: The place of First Nations stories in education. Simon Fraser University dissertation

https://firstnationspedagogy.ca/storytelling.html#:~:text=First%20Nations%2C%20Inuit%2C%20and%20Metis,relationships%2C%20and%20ways%20of%20life.

https://www.collectionscanada.gc.ca/stories/index-e.html

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