Language and Dementia: what’s the problem?

demphd

Today we have a guest blog by Kate Swaffer (@KateSwaffer) on (in)appropriate language use in dementia. Right in time for our #demphd chat today at 11 am British time! Your #demphd team ( Grant, Julie, Paul, Clarissa) 🙂

Dementia is heavily covered in the media. From Dementia Awareness Weeks to national guidelines and documentaries, dementia becomes ever more present in everyday life. With such a heavy media coverage of, it is likely that there are some issues that we people with dementia feel are inappropriate.

The problem is that too often, the rights of many people with dementia are not being respected when it comes to the way we are talked about, or referred to publicly, by people without dementia, such as journalists, health care professionals and care partners.

Yet again, during another two recent Dementia Awareness Weeks, we have been blitzed by articles and stories in the print, radio, television…

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A day in the life of a peer mentor

This blog was written by Nicky Gavin, a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  VOCAL provide both one-to-one and group peer support to carers of people with dementia. This service is one of the Trust’s 13 funded dementia peer support and befriending projects.

MENTOR

Today, as I am looking after my granddaughter (which I do every Friday to allow my daughter-in-law to work), I find myself thinking about the past week.

I have been volunteering with VOCAL – Voice of Carers Across Lothian – for a year now and this has been my busiest week with them so far.

I had so much support from VOCAL when I was new to caring for my father, that I was really keen to give something back.  Then Jane Greenacre, who is VOCAL’s Assistant Director and peer mentor co-ordinator, approached me to get involved as a volunteer. We discussed a few roles and I did try working in the carers centre for a bit, which I enjoyed, but when the mentoring project was mentioned, I knew it would be better for me.

I learned so much caring for my Dad and consider myself a people person so it felt a good fit.  Going through the training programme, I grew more confident that peer mentoring was something I wanted to do as I would not be giving advice (which I don’t feel qualified to do – what was right for me and Dad might not be right for others), but telling my story, letting others take the things they want to from it, and sharing experiences.

Last week was particularly busy, as I am currently mentoring two different people and we also had a team meeting. On Wednesday, I had my final meeting with a person I have been mentoring for a while.  We met in the same quiet cafe we have used for our previous meetings and, at her request, our meeting focussed on my role as my Dad’s power of attorney, so I shared quite a lot about the practicalities of this but also how I felt doing it.

This is something I always try to do, as often my mentees have a good understanding of processes but find it difficult to use them due to the intense emotions involved.  Saying our goodbyes was quite difficult as I will not see her again, but I left feeling upbeat as she kindly thanked me for my time and told me that it had been really useful to talk to someone who has been though the same thing as she had – none of her friends had been carers before.

On Thursday I had a first meeting with a new mentee so we met in the Carers Centre (first meetings are always in the VOCAL offices). I got there a bit early to make sure I had the kettle boiled to ensure a warm welcome.  My new client was particularly interested in behavioural changes and how I coped with them.

When I talk about this, I always think back to my training and am mindful of identifying the learning from my story, the positives, and the things I would do differently.  It might not be too helpful to share all the struggles I had without providing some light at the end of the tunnel!

The meeting went well and I was pleased that said she would like to meet me again.  She had been unsure that we would have enough in common as she was caring for her husband, and I was a carer for my Dad, but she found it useful and we scheduled a meeting for two weeks time and she seemed to head off a little lighter than she came in.  A number of new clients have been concerned that my Dad’s dementia was different from their own experiences with a loved one.  That’s true, but what is common are some of the challenges that we face as families.

The team meeting was good as always. I like going to the Centre and catching up with the staff but the peer mentor team meetings are the only time I see the other mentors.

I like these meetings, as we really got on well as a group when we did our training, but also as it gives me a chance to learn from their work too. The meetings are quite structured by Hazel (the carers support worker who manages us) but she always allows us time to catch up as well and it gives us all time to reflect on how we do our work.

My mentoring journey has so far been really rewarding, and I am glad that it’s a journey I chose to embark on.

With thanks to Nicky Gavin, volunteer peer mentor with VOCAL (Voice of Carers Across Lothian)

A festive thank you!

As the festive period is well and truly upon us and another year draws to a close, I wanted to take this opportunity to reflect briefly on our journey over the last twelve months and to thank everyone who has worked with and for the Trust – helping to make it such a successful and rewarding 2015.

Our Annual Review for 2014-15 – which you can find here – highlights what we have already funded and our future funding plans. I hope you share my view that it’s inspiring to read about the benefits already achieved for care experienced young people and people affected by dementia through our funding to date – for example, our two individual award pilot schemes. I also hope you feel as excited as we do about the potential benefits our active and planned future funding awards will bring to our beneficiaries in the years ahead.

We held our first National stakeholder event, in November 2015. The event was called “Connect, Build, Transform” because the Trust believes it is only when we really listen to what people affected by dementia and care experienced young people want and need and empower them to connect and work with others to achieve positive change – that their lives be truly transformed for the better.

The Trust has now been active for two and a half years and, as this year closes, I think we have made good progress on our journey to becoming an effective funder – enabling those we fund to improve the quality of life and well-being of people affected by dementia and care experienced young people across Scotland.

Warmest wishes for a happy and peaceful festive period, and my heartfelt thanks for helping to make 2015 a better year for so many.

Maddy Halliday
CEO
Life Changes Trust