Supporting LGBT people with dementia

Almost a year ago (September 2017) saw the launch of the Dementia Action Alliance’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I’m a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, my March 2018 blog was all about rural communities, and last month I told Kathy’s story, about living with a learning disability and dementia.

For this post, I want to think about the challenges for people with dementia who are lesbian, gay, bisexual or transgender (LGBT+). Of the six groups the DAA campaign focuses on, LGBT people with dementia are the most hidden of all in my opinion and arguably the most stigmatised, coping with societal attitudes towards their age, sexuality and dementia at the same time.

Many older lesbian, gay, bisexual or transgender people have led a life that's been all about hiding away, characterised by fear and intimidation. Historically as a nation we haven’t been welcoming to LGBT people with layer upon layer of discrimination and ostracisation, not to mention violence and criminalisation. Indeed, homosexuality was illegal in the UK until 1967 and was classified as a mental illness until 1973. 

Since then, the immense changes that have happened legally and societally will have brought a huge amount of relief and joy for many LGBT people, but it's important that my generation - who see PRIDE marches and same-sex couples marrying - don't forget the struggles that remain vivid in the minds of some LGBT people who are now ageing. Examples like this, of a care provider celebrating with their own PRIDE event are still few and far between. No aged-care client that I work with has done anything like this to my knowledge, and I know from quizzing learners at my training sessions about how we meet the needs of people from different communities, including LGBT, that I usually get blank looks.

One of the big motivators for writing this blog came from what a learner said to me a few weeks ago, echoing others in the past: “We don’t have anyone living in our care home who’s gay!” It’s an interesting assertion that many staff struggle to quantify since they have to admit that they don’t know the full life history of every person they provide care and support for, and that which they do know may be the ‘acceptable’ front that so many LGBT people in their 70’s, 80’s and 90’s have cultured from a young age to protect themselves from the worse of what society would have thrown at them over their lifetimes.

With the development of dementia, however, that carefully protected private life can become extremely vulnerable to intrusion in so many different ways. Contact with health and social care services may be something that a lesbian, gay, bi or trans person actively avoids due to fears from their earlier life of medical professionals who tried to ‘cure’ them through ‘conversion’ therapy, much of which would have come under the umbrella of old-style psychiatric services, and of course modern-day psychiatry is a key part of dementia care now.

If an LGBT person has a partner, that person may be assumed to be a relative or friend rather than a partner simply because they are the same sex, and difficulties around a homosexual partner having the same rights as a heterosexual partner remain commonplace. The disadvantage doesn’t end if the person is single either – a person with dementia who doesn’t have a partner, children or other loved ones to advocate for them is likely to have poorer experiences of health and social care services, and due to their sexuality, many older LGBT people may have become estranged from their family.

Life can feel very exposed for a person with dementia, and exposure may be the very last thing someone who’s never come out, or who struggled to come out many years ago, wants. A person may feel the need to come out repeatedly as they meet with the numerous different professionals that characterise most people’s experiences of health and social care services. Working out when it is ‘safe’ to disclose your sexual or gender identify can be difficult enough without the added complication of dementia affecting your cognition and decision-making abilities.

Issues around trust can be hugely challenging, not least since the person may be terrified of people who are effectively strangers providing care and support or any peers that they are living with in a care home environment making hurtful judgements should they learn the person’s sexuality or gender identity. Problems around personal care can be particularly acute, since the person may worry about being punished for their sexuality, or may be fearful of any scars from gender reassignment being noticed, commented on, discussed by colleagues or documented in a care plan.

We talk a lot in social care about supporting people to feel engaged and to express themselves, but if you’ve been born male and feel most comfortable identifying as a woman and dressing accordingly (or vice versa), trying to be yourself whilst living in a communal environment may feel impossible. For that person the risk of isolation and loneliness, and potentially more rapid progression of their dementia as a result, is a very real possibility.

So how do we overcome these challenges? I’m not naive enough to believe that care homes or other social care environments can universally become places that are welcoming and inclusive for LGBT people overnight. But while we cannot necessarily influence the viewpoints of the person’s peers, I believe that progress can be made in educating the workforce.

When I first designed my training modules a few years ago, I will admit I didn’t include education about any seldom heard groups. Now, I talk about LGBT, BAME, and LD communities routinely, as well as younger people living with dementia. Presenting the idea that staff may be supporting a person from the LGBT community and questioning assumptions is a first step towards improving inclusion. 

Importantly, it also ties in with everything I teach in relation to life story work. The idea that not everyone wants to share their life story, or that they may share what they believe are the ‘acceptable’ details, rather than those they fear are ‘unacceptable’, are some of the biggest challenges in how we understand the person’s past to improve their support today.

Acknowledging where difficulties like these lie, and pooling our knowledge to improve how we meet the needs of our ageing LGBT population, is so important if we are to make services more responsive to lesbian, gay, bisexual or transgender people who are living with dementia and need, more than anything, to feel less stigmatised… not more.

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Why culture matters in dementia care

Last month saw the launch of the Dementia Action Alliance’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I’m a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have a learning disability and dementia. For this blog post, however, I want to think about the BAME population, and with Brexit on the horizon, anyone born outside of the UK who is now ageing in the UK and living with dementia.

When I contributed to the Jessica Kingsley book ‘Culture, Dementia and Ethnicity’ I wrote about my experiences of my dad’s relationship with his Filipino key worker. Many others from BAME backgrounds wrote about their own experiences, some hugely challenging due to cultural differences, the expectations and assumptions that are made by different communities, and the sheer dearth of culturally-appropriate services.

In my dad’s 9 years in care homes, I only ever met one lady who was from a BAME background. Granted dad was living in the home counties rather than an inner city, but with a significant Asian population in the local town, it struck me as strange that more people with Indian or Pakistani heritage didn’t live there too, particularly as the staff team was very multicultural.

Of course when I began the work I do now, I heard all those stereotyped viewpoints that Asian families ‘look after their own’ - indeed, just nine days after I began my D4Dementia blog, I read a blog published on The Age Page by guest blogger Manjit Nijjar, recalling her experiences as a carer to her father. The blog completely drew me in as Manjit described the struggles she faced, and the prevalence of the notion that Asian families ‘look after their own’.

Keeping health problems ‘behind closed doors’ and ‘looking after your own’ are viewpoints that make dangerous assumptions that a family is able to cope – Manjit wasn’t coping, and in the 5+ years since her blog was published, I’m sure many other carers from BAME backgrounds have had similar experiences. Diagnosis rates within BAME communities don’t reflect the likely prevalence in the population, suggesting that many families either don’t want to seek help when they notice changes in a loved one’s health, or are believing stigmatised viewpoints about dementia ‘madness’ which leave them too ashamed to seek help.

Even with a large extended family, it isn’t a given that family carers will have the skills and abilities to care for a loved one with dementia, and if they aren’t accessing mainstream services, they may never receive any professional support. Package all of that up together and you are likely to find significant numbers of isolated BAME families struggling to cope against pressure from their community to just soldier on, despite limited or non-existent knowledge of dementia.

Then, of course, there are the challenges faced by the services people from BAME backgrounds do access. From the time I spent with the Asian lady in my dad’s care home, it was clear staff had little understanding of how to support her. She’d reverted to her childhood language that few people (including her family) understood, was disorientated in an unfamiliar, very British-style environment, and attitudes to supporting her cultural needs around food (Halal) were at times shocking.

We know that dementia care for those born in this country has many challenges. For those born overseas, however, whose early memories and emotions are attached to a different land, living in another culture greatly reduces the chances of living well unless services are very mindful of the needs of those individuals and their families, most notably:

Language: As with the Asian lady in my dad’s care home, many people from BAME backgrounds who develop dementia may revert to using a language they learnt in their childhood. As with all language challenges, however, it may not be a simple case of using different words - the words, letters and sounds can become muddled, no matter what the language is that the person is trying to communicate in. Looking beyond verbal communication to aspects like body language and gestures may be more helpful than trying to decipher words and phrases.

Environment: One of the most powerful recent testimonies I’ve heard regarding supporting a person from a BAME background who is living with dementia came on a BBC Radio 5 Live phone-in programme last month (sadly no longer available on iPlayer), where a gentleman described supporting his father during his years with dementia, and a particularly poignant trip to Pakistan to enable his father to see family and friends he’d grown up with and visit places that were important to him. He described his father’s joy, and listening to his story it was clear that for those few short weeks his father truly felt he’d returned home - he was living well.

The son went on to describe the great comfort those memories give him now his father has died, and although I’m not suggesting families or care providers can all facilitate holidays to homelands for every BAME person who is living with dementia, there is some really important learning here about recreating familiar environments (including colours and fabrics, and sensory elements like smells and sounds) maintaining connections with family members and friends (through technology like Skype), and really investing time and effort in life story work.

Customs: These can be anything, from religious practices to the way the person structures their day. Some elements, like prayer time, may be very important, and there may be sacred elements to the person’s life, and their end-of-life wishes, that need to be understood and carefully adhered to.

Preferences: Again, the spectrum here is huge, anything from the way the person dresses to the food they eat, the occupations and activities they wish to take part in, and potentially who they want to spend their time with. Whilst we may actively encourage multicultural living, it isn’t something everyone feels comfortable with, particularly when single men and women are mixing together in communal areas.

When thinking about both customs and preferences, it’s important to remember that for every custom or preference that is vital to one individual, another person living with dementia may wish to discard some or all of these through their own choice. Being non-judgmental and mindful of choice and control is vital in supporting the person effectively. Just because a person has dementia it doesn’t make their choices, whatever they may be, any less relevant.

If all health and care services can become more culturally aware, and in turn reap the benefits of that (both for the BAME individuals they support and for everyone else though learning about and celebrating other cultures) it will represent a really important step in improving the lives of people from BAME backgrounds who are living with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Keep the faith

One of the first things to become bypassed in someone’s life as their dementia progresses and they become more reliant on social care can be their faith, beliefs or spirituality. This is often as a result of professionals caring for them feeling very uncomfortable about anything religious or spiritual and dismissing it, actions that echo the words of a famous adviser to a former UK Prime Minister who once said, “We don’t do God”.

It is, however, vital to recognise that many people actively want to ‘do God’ or indeed follow any other religion or belief structure, and it is absolutely their right to do so. This is particularly true when someone’s health deteriorates, or they have been diagnosed with a terminal illness. In those times many people draw strength from their faith, and no one should deny them that or say that they cannot, least of all those who are charged with their care.

Whilst you can exercise your right to follow your chosen path of belief or spirituality in almost every situation life can throw at you, living with dementia has a tendency to gradually remove that autonomy. If you actively practice a faith, you will then potentially need support to fulfil that calling in your life, and understanding from those around you who may come from different backgrounds and cultures.

I have seen both the positive and negative approaches to supporting someone who is living with dementia within the context of their religious beliefs. The positives were largely in relation to my father, who received regular pastoral support, particularly during the last few years of his life and during his end-of-life. This was largely due to good fortune, however, as another relative in his care home happened to be a practicing clergyman who visited his mother daily, and was happy to provide pastoral support in his professional capacity to anyone else in the home. There were also monthly services that residents could attend, and the hymn singing was always a particular favourite with dad.

Sadly a Muslim lady had a far more negative experience when she moved into the home. Despite requiring a strict Halal diet, some carers were caught feeding this lady non-Halal meat. When these carers were questioned about the food, they said that this lady’s dementia was so severe she wouldn’t know what she was being given, and had been willing to eat it so it made no difference. Moreover, with the exception of one carer who was from the same cultural background as this lady, no others were able to correctly assist her to dress in a manner befitting her cultural and religious heritage.

Clearly the experiences this lady had did not represent good care, but they do perhaps give an insight into how easy it is considered to be to bypass that vital role of supporting someone to maintain their religious and cultural beliefs. Often a person with dementia cannot fight back against this, demand better or indeed remove themselves from what has to be considered a form of abuse, hence why we need a far greater emphasis on these elements of care.

Advocacy can help, as I discussed here, but fundamentally we need to ensure that care in the UK exists within the context of being person-centred, and doesn’t take the ‘easy’ route of ignoring someone’s faith or beliefs. Exploring the whole person means looking not just at the physical things like possessions and tangible choices that are often much easier to acknowledge, but also accounting for the things that don’t exist in a physical form and represent the spiritual.

For anyone who has a faith or belief structure, that spiritual side of their life is often far more important than the physical things that they are surrounded with. Yes a cross, beads, items of clothing or symbols associated with particular customs or festivals can bring incredible comfort, familiarity, joy and peace, and hymns, songs, chants and readings can provide fantastic therapy, but it will often be about the unspoken or otherwise untouchable things that their faith brings them that lie at the heart of their life.

Care plans include the opportunity to describe someone’s religion, but as we all know these are documents that are largely completed purely for regulatory purposes. To be blunt, questions about my dad’s religious beliefs were directly linked to the questions about the sort of funeral he would want when the time came. For the most part, the pastoral care that my dad had was due to the arrangements we made as a family, which begs the question, what happens to everyone else?

Routinely ignoring the spiritual needs of people with dementia is never going to represent good care. Where someone has a faith that they have previously actively pursued and wish to continue with, they must be supported to do that whether they are living in their own home and relying on regular visits from a faith leader or support to attend an act of worship, or are living in a care home, whose remit as a caring community should always include opportunities for regular worship and one-to-one pastoral care. Without these structures, there is a danger that the only spiritual support someone with dementia experiences will come from a hospital chaplain at a point of severe crisis, if indeed they have any support at all.

Engaging faith leaders in increasing their knowledge and understanding of dementia is an important step to ensuring that everyone who needs their support has it, but without social care embracing this key aspect of many people’s lives appropriate pastoral care for all will still be a long way off. Care is not about our own personal views; it’s about walking into someone else’s world and embracing everything about them, be it seen or unseen, and ensuring that all who want to have the opportunity to keep their faith alive can do so.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

My dementia wish list

Welcome to 2013, the beginning of another new year and no doubt another set of targets for the tick box culture in health and social care. 2013 promises to be an important time for dementia, with the need to build on the awareness generated in 2012 and put all of the promising words and rhetoric into action, to bring real and lasting change to the lives of people with dementia now and in the future.

Currently there are over 800,000 people with dementia in the UK, and over 35 million people worldwide. For me the greatest voice in dementia awareness, education, policy and implementation in 2013 must be theirs, their families and carers past and present – people with first-hand experience of what dementia is really like and what is really needed to improve the lives of those who are living with it.

As someone whose dad had dementia for 19 years and who sadly lost him to it in 2012, here is my dementia wish list for 2013:

(In no particular order)

1)      Dignity and respect for all
It costs nothing and must be the foundation of all aspects of dementia care.

2)      Understanding
People with dementia are still people, with thoughts, feelings, emotions and sensitivities. Understanding what living in their world involves is vital to improving their quality of life.

3)      Personalisation
Treat each person as an individual and tailor their care to them. Appreciate their past, support their present and help to make their future the best it can be.

4)      Compassion
Kindness costs nothing and yet changes so much, not just for the person who is being shown compassion but for the person giving it. What is good for people with dementia is good for all of us.

5)      Opportunity and diversity
We all want a sense of achievement and people with dementia are no different. They still want to have the chance to do the things that they love, or try new hobbies and activities, and they should be encouraged and facilitated to do this.

6)      Belief and positivity
There is so much we can do to improve the lives of people with dementia so that this disease is no longer seen as a black hole of nothing, stigma is reduced, and people are less fearful about admitting that they have dementia symptoms and need some extra help.

7)      Fairness and independence
Our modern world of self-service and technology can be baffling for people with dementia. The systems of daily living must be flexible to accommodate people with dementia so that they can remain as independent as possible.

8)      Involvement
Don’t ignore people with dementia, talk about them rather than with them or assume that they have nothing to contribute. Remember the saying ‘Nothing about us without us’.

9)      Embracing experience
Society can be very dismissive of older people, especially those with dementia, and the contribution that they can make to their communities. As a result many older people are made to feel that they are an unwanted burden. Yet they are a great asset to their communities and can teach us so much – it is time to listen and learn.

10)   Action, not just words
So much was said about dementia in 2012. Indeed the disease has never had such a high profile. This must not just be a short-lived ‘trendy’ topic to dip in and out of however. The problems people with dementia have within the health and social care systems and wider society are reflective of the issues troubling many others. Sustainable long-term solutions to issues ranging from social care funding to care in hospitals, standards in care homes to supporting people within their own homes, diagnosis to end-of-life care are all desperately needed and long overdue.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook