5 minutes with Sally Knocker

Monday 4 June 2018

1. Can you tell us about Dementia Care Matters and Opening Doors London and your role with these two organisations?

sally knocker safe to be me 1200 x 628I have the joy of working with two very different organisations making a difference to the experiences of people living with dementia.

Dementia Care Matters is an international culture change organisation which has recently been acquired by The Salvation Army Aged Care Plus in Australia.  There is a great synergy between Dementia Care Matters core focus on ‘Feelings Matter Most’ and that of the Salvation Army ‘People Finding Freedom’.  These central themes of emotions and freedom are integral to ensuring people living with dementia feel safe to ‘be’, are valued for themselves and do not experience being controlled by others at a time when people are at their most vulnerable.  Dementia Care Matters is currently working in the UK and Ireland, Australia, Canada and the USA.  It is renowned for The Butterfly Model® which creates places where people live, work and support each other in a family like approach believing it is possible to really reach and connect to a person living with a dementia and give hope for a more positive future.  My role is as a Consultant Trainer working alongside teams to create these inspiring changes.

Opening Doors London is the biggest charity providing information and support services specifically for older lesbian, gay, bisexual and trans (LGBT+) people in the UK.  The charity provides a wide range of social opportunities, a befriending service and a training and consultancy service.  My role was to help set up a Rainbow Memory Café in 2017 to ensure the charity is reaching LGBT+ people living with dementia and their carers.

This monthly group on the second Monday of the month in Euston in central London creates a relaxed and comfortable space for people to be open about dementia and open about their sexuality or gender identity.

2. The DAA launched our campaign From Seldom Heard to Seen & Heard in September. Why do you think it is important to consider people affected by dementia in seldom heard groups? 

As we all know with any diagnosis, there is danger that the label ‘dementia’ can become a dominant part of our identity, which is not necessarily what we choose but how others see us.  Dementia does not discriminate in terms of whom it affects, and what seems central to me is to always see the whole person first and that we all have different parts of our identity that are core to us.  For seldom heard groups including those who are lesbian, gay, bisexual or trans, there is a very real danger that our ‘minority’ identity is either not seen at all or not regarded as important.  I have many parts of my identity which are very important to me; being a mother, an animal lover, a keen traveller and a feminist woman.  My lesbian identity defines much more than whom I love as it shapes the interests I have, the books I read, the films I enjoy and the friends who help me feel cherished and valued.  But perhaps more importantly when it comes to living with a dementia, it would have an impact on how safe I felt at a time when I was at my most vulnerable.  I have experienced quite deep rejection from a family member and from a church community in my early life and this can make me more anxious about trusting others.  For an older generation of LGBT+ people who have lived through a time when they were criminalised, seen as ‘sick’ or had to hide who they were for fear of losing family, jobs homes or even their children, trust is a huge issue.  

The work with seldom heard groups to me is about raising awareness that we are not asking for ‘special treatment’ but we are asking for special consideration as to the things which help us feel comfortable within mainstream services.   It is also about increasing visibility of LGBT+ people with dementia, so that older people are not automatically assumed to be heterosexual when they contact services.    There are even more complex challenges for trans people, who do not always have the option of not being ‘out’ and can therefore face even more unkindness and judgement.

3. Can you tell us about how your career to date has led you to your current role?

I have worked with people living with dementia for over 30 years and done more focused work around LGBT+ issues for about 12 years.   My role with Dementia Care Matters is exciting in terms of its opportunities to work with care teams in different parts of the world and through education achieving culture change. At the Rainbow Memory Café,  I also enjoy the direct work of running a group for people living with a dementia and their partners as this enables me to draw on my training as a dramatherapist.  They are both complimentary roles as my training is informed and enriched by my having regular contact with people living with a dementia in a therapeutic role.

4. What are you currently working on in regards to dementia?  

With Opening Doors London Rainbow Memory Café, we are keen to continue to publicise our existence and were excited to recently have a small film about our work featured on Channel 4 News.  We need to find more lesbian, bi and trans people affected by dementia as currently the majority of members are gay men.

At Dementia Care Matters, we are currently working to develop our new teams in Australia and Canada and to build up our UK and Ireland team so that we can reach many more people living with dementia, particularly in care homes.   We know how to transform lives and have lots of examples of how we have done this.  With increased capacity in Dementia Care Matters and becoming a charity as part of The Salvation Army, we hope we can extend further into the care sector who may not yet know about The Butterfly Model®.

5. Tell us something interesting about yourself. 

I have an addiction to phoning into Radio-phone in programmes!  I think this is because I would have also loved a career in radio journalism, partly because of my huge curiosity about and interest in talking to people from all walks of life.


Read about the DAA's campaign From Seldom Heard to Seen and Heard