Bringing dementia out: working with LGBT+ communities

Many challenges that dementia presents to LGBT+ people are the same ones faced by everyone, but some are unique. Natasha Howard shares the latest developments from Alzheimer’s Society’s innovative LGBT+ and dementia project.

Bring Dementia Out is an innovation that was tested in Brighton and Hove, and in Greater Manchester.
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Some people ask why we needed a project to explore the needs of people affected by dementia who identify as a lesbian, gay, bisexual, trans or with another sexuality or gender.

I recently wrote about why this work is so important in our magazine, Dementia Together.

Our approach has been to work together with stakeholders and those affected by dementia to define the problems and find an effective solution. Learning from people who are directly affected, we hope we can meet their needs and make a difference to people’s lives.

The project follows our Innovation LIFE model - Learn, Investigate, Find and Experiment. We have identified two potential solutions this way and the next step is to test one of these in the real world!

Innovation team working with LGBT+ people affected by dementia

The story so far – Learn

The idea for the project first came from colleagues in Brighton and Hove, who identified the unmet needs for LGBT+ people affected by dementia. I am delighted to have had the opportunity to lead and apply our innovation approach.

We anticipated some of the challenges LGBT+ people affected by dementia faced, but the Learn phase of the project really opened my eyes. I immersed myself in books and articles, and I spoke with colleagues, researchers, organisations who are working in this area, as well as people affected by dementia who identify as LGBT+. I found there was a very long list of unmet needs.

We know that it can be difficult to engage with the LGBT+ community affected by dementia, often as some people aren’t comfortable in coming forward. But this was vital for us to co-create solutions that meet people’s needs. We were able to involve 19 LGBT+ people affected by dementia in the project, and their input has been invaluable.

Gaining further understanding – Investigate

The Investigate phase kicked off in February with our first discussion session with people affected by dementia at the LGBT Foundation in Manchester. The aim was to gain further understanding of the issues people face and prioritise these. We highlighted several key challenges:

  1. There is no go-to place for support.
  2. People experience prejudice from professionals (such as at the GP or in Care Homes).
  3. People have concerns around long-term planning for care.
  4. People don’t understand how the needs and experiences of LGBT+ people affected by dementia may differ.

We identified other contributing factors such as those who are isolated and may not have support from a long-term partner or family. While others faced the ‘triple’ stigma of dementia, sexuality and age.

Turning problems into solutions! – Find

The Find phase of the project started with a creative workshop in March in London. Almost 50 people attended the workshop, including people affected by dementia, Society colleagues, representatives from the Dementia Action Alliance, Opening Doors London, Terrance Higgins Trust and many more.

The creative workshop for the LGBT+ innovation project

The creative workshop attended by 50 people

Together, we explored the challenge areas and came up with ideas for potential solutions. It was a day full of energy and passion,, with over 100 ideas generated!

All of these ideas were reviewed by the Innovation Team – five were then shortlisted and built on with feedback from all those involved. Our top five were then narrowed down to just two ideas, which we pitched to a panel, ‘Dragons’ Den’ style!

Pitching ideas to the Dragon's Den

Pitching our ideas to the ‘Dragon’s Den’ panel in May 2018

To avoid keeping you in suspense any longer, the two solutions we have identified are:

  • The Go-To Place: An online hub to connect people, and share good practice, information, resources and signposting around LGBT+ and dementia.
  • Bring dementia OUT: A way to raise awareness and encourage action to better support the lived experience of LGBT+ people affected by dementia.

What's next? – Experiment

We have almost reached the Experiment phase! This is where we quickly develop a prototype to test and gather feedback, making sure our solution will work in the real world.

We are currently exploring which of the two ideas we will consider taking forward to this stage. We hope to work in partnership with organisations to design and deliver this.

Additionally, we have begun discussions within Alzheimer’s Society to ensure the learning we have gathered can align with and provide further insight into our wider Equality, Diversity and Inclusion work.

We’ve had over 120 people involved in this project, and I wanted to share my thanks with each and every one of them. We couldn’t have got to this point without working together!

Finally, I’ll leave you with some words from Mike Parish, who cares for his husband Tom, both of whom have been involved in this work from the start:

'This amazing new creative project is without a doubt, not only a first, but also making ground-breaking progress that will have a long-lasting legacy and provide an example of excellence.

'When our LGBT+ brothers and sisters living with dementia lack a voice, when that voice of courage to proclaim their sexual identity becomes quietened and when they most need an advocate to support and protect their proud individuality, we need to step-up and act with them and for them.'

How to get involved

If you want to keep up-to-date or be involved in the next stage of this work, email Natasha Howard or call 020 7423 3512.

Email Natasha
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My problem is, I am struggling to get an appointment with my husband's dementia specialist, he has not been seen for 20 months. His illness is progressing rapidly, and this last year has become physically aggressive, I have made the situation clear to his MH doctor to no avail. After a hard period my GP was told I could have an appointment, however that was not quite true, I was only offered an appointment with an allocated nurse, who in the past has contributed NOTHING. At the moment I have got the CCG looking into it, why should we have to go to such lengths, to get help for our loved ones, surely it is their right.

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