Powys Dementia Network – starting off the new decade

Powys Dementia Network continues to meet at least twice each year in different parts of the county. We wrote about the summer 2019 day, where we were treated to a surprise visit from the children taking part in Hafren School’s intergeneration project, here.

The first event of the new decade took place in January 2020 at Crossgates near Llandrindod Wells. Sue Newham, who is an Engagement Officer in the Health and Wellbeing team at PAVO, helped organise this latest day, and reports back for us now on how the network is growing and evolving to try and meet the varied needs of those attending and looking to find out more about dementia initiatives across this vast county of Powys.

The Powys Dementia Network aims to bring together those living with dementia and their carers, and third sector and statutory organisations providing services for these people. It is funded by Powys Association of Voluntary Organisations and Dementia Matters in Powys.

Getting the balance right has always been an issue, as the needs of organisations who attend and have a table on which to display their literature, are different to the needs and desires of those living with dementia. The number of individuals attending has always been smaller: 3 in February 2019, 6 in July 2019 and 6 in January 2020. Overall attendance varies between 28 and 42. Venues cycle between north, mid and south Powys and the events are held every 6 months. 

Deborah Gerrard, Chief Officer of Dementia Matters in Powys

The general structure of the day has evolved, and with strong input from Dementia Matters in Powys, the last event included a period of practical activities, including drumming, art and story-telling. People could refresh themselves at a “water bar” with a selection of waters flavoured with fruit, and there was the opportunity to experience virtual reality trips to the beach and the countryside. These activities enabled people to chat and share their stories, and proved a very popular part of the day.

Feedback from the last event was very positive with more than half of the participants rating it as excellent and the remainder rating it as good. No one rated it lower.

Positive outcomes for Jane (not her real name):

By attending the last two Dementia Network events, Jane has heard about the many services available to support older people, including those with dementia. She has become more able to discuss the possibility of dementia in herself and has expressed more contentment as a result of this.

Jane had displayed growing levels of frustration with lapses of memory, and was prone to talking negatively to herself about being “a silly old woman” and telling herself off for lack of concentration. By hearing from others living with dementia, and getting used to the term dementia in her own life, she is more positive about herself, realising that she can’t simply “pull her socks up” and perform better. She is more at peace with herself.

As a result of hearing about the “My life, my wishes” booklet at the Dementia Network, Jane has started completing this with her family. She has also made provision for powers of attorney covering finances and health and wellbeing.

After attending the Dementia Network in Newtown in July 2019, Jane felt able to speak at the January 2020 network event, which is something she has not been used to doing before. Participants were impressed by her desire to carry on with her life and to live as independently as she could for as long as she could.

Lucy Taylor, PAVO Community Connector

Positive outcomes for Lucy:

Lucy Taylor is the Community Connector for Llandrindod and Rhayader and also attended the day. The network is invaluable for her – “I’m able to catch up with people I’ve not seen for a while due to everyone being so busy! The mix of people attending, from those living with dementia to practitioners, and others on the side, is really very good. I also picked up two referrals on the day and am providing ongoing support to these new clients.

I thought it was particularly powerful to hear two people speak about living with dementia, and others have said how brilliant that was. People hear the word ‘dementia’ and start thinking – that’s the end of everything and I’ll just forget things now. But for most people it is a much longer journey and they live with dementia for a good period of time. So this was a really positive message to come out of the day. By speaking they also raised awareness of how they first became aware of small signs of dementia which occurred in their daily lives.

There were some fantastic activities on the day, such as the drumming and the water bar. And they all had a purpose, they weren’t just random activities. So, for example, the drumming was obviously social but also that kind of rhythmic tapping is very calming, whilst the water bar brought home the message that you need to stay hydrated to keep in good health!

It would be really great to try and bring in people from the smaller communities in the county at future events too if at all possible”.

The next Powys Dementia Network event will take place in Brecon on 15 July 2020. If you are interested in finding out more then please contact Sue Newham by emailing sue.newham@pavo.org.uk or ringing 01597 822191.

Compassionate Mental Health conference, Hereford, November 2019

by Sue Newham

Health & Wellbeing Engagement Officer, PAVO

I went along to this conference with only a vague idea of the content, but being told by my colleagues at Powys Association of Voluntary Organisations that it would introduce me to some new ideas and give me plenty to think about. They were right!

I was asked on arrival if I’d come to do the yoga. I hadn’t, but it was certainly a novel start to the day!

Novelty continued with an opportunity to engage in “Compassion Circles”. Andy Bradley encouraged us to get into threes and listen to each other “with a quiet mind and an awake heart.” Andy’s concern is that our systems, with time pressures and outcomes, can make people feel as if they don’t really matter. Really listening to people can change their feeling of being valued for who they are.

The keynote speaker was Robert Whitaker, author of books about mental health treatment called “The anatomy of an epidemic” and “Mad in America.”

Robert outlined the history of dealing with mental health issues in the USA. He explained that, in the 18th century, the prevailing view and practice was to treat people experiencing mental breakdown as having lost their humanity. Sufferers were treated like animals and subjected to barbaric treatments. At the end of the 18th century, the Quakers set up homes where sufferers were seen as “children of God” and treated with compassion in pleasant surroundings. Records of the day suggest that there was a good rate of recovery following this treatment. In the 1980s, the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders 3 became the standard handbook of psychiatric diagnosis. It heralded a shift towards the disease model of mental health. Whitaker sees this as creating a line between “normal” people and “abnormal” people, where stresses associated with life become illnesses to be treated.

I found myself pondering the role of the American Psychiatric Association and the drugs companies. Is it likely that companies that have seen a 50 fold increase in income from mental health drugs would be open to other ways of treating people without drugs? If drug companies fund the American Psychiatric Association, which apparently they do, is it possible for that organisation to embrace different treatment models?

Early disease models of mental illness seemed to be based on the theory that chemical imbalances within the brain lead to symptoms of illness that can be corrected by medication. Although the theory had been found as inadequate as early as the mid 1980s, it has still continued as an urban myth. This was a shock to me, as before this conference, I too would have said that mental illness was to do with chemical imbalances in the brain.

Robert Whitaker challenged the prevailing disease model as an effective means of treating mental distress. He said that, if the model was correct, overall recovery rates should now be going up as medication successfully treats people’s illnesses. On the contrary, statistics record that 1.1 million people were on long term disability in the USA due to mental illness in 1987. That number is currently around 5 million. There is also evidence that full recovery is more likely amongst unmedicated groups than medicated groups.

Whitaker’s overall message is that the medication model has not achieved the outcomes expected and has failed to produce scientific evidence that it is improving the mental health of the American public. He mentioned several projects that had shown success in non-medical treatment of mental distress: the Soteria project; the Norway Medication Free Inititative; the Open Dialogue's model developed in Finland.

He suggested that we need to change the script, seeing struggles as a part of being human, rather than a sign of illness which may see sufferers relying on medication for the rest of their lives. He advocated social support, listening and giving people a sense of hope. Psychological therapies also have a role to play in helping people work through traumas and distress. 

During another session, I heard from Margaret Jordan about the benefits and practice of Sensorimotor Psychotherapy, which treats people holistically rather than focusing on the brain. A phrase which Margaret used seems to me to be important and worthy of more thought. She said, “Trauma is an action that needs to be completed in order for the symptoms to reduce.”

I observed an Open Dialogue session in which a course participant agreed to talk about a personal experience and we observed how Open Dialogue can help people to work through difficulties they were facing. The practitioners were Yasmin Ishaq and Rai Waddingham. This was an extremely interesting, but in many ways simple intervention, involving taking time with people and those close to them and listening to them. Yasmin is a social worker and psychotherapist and Open Dialogue lead for NHS Kent. This seems like a very positive way that people can be given time, listened to and enabled to process and work through their difficulties.

I enjoyed listening to Ruth Young from Jamie’s Farm talking about residential weeks for troubled young people, which involve real farm work and responsibilities, as well as group times for talking. This is how the website describes the programme, “Jamie’s Farm acts as a catalyst for change, enabling disadvantaged young people to thrive academically, socially and emotionally. We do this through a unique residential experience and rigorous follow-up programme, combining farming, family and therapy.”

So what was my overall impression of the day? As someone with only one year’s experience in the mental health field (in other words, a complete novice) I found it thought provoking! It challenged some views that I had held as facts, without really knowing why.

It shocked me to hear that people with severe mental illness have a reduced life expectancy, often dying between 10 and 25 years before their peers. The World Health Organisation suggests that some physical illness may be exacerbated by antipsychotic and related drugs.

Overall, it left me with a feeling that profits and big business set the agenda for many of the ways we tackle everyday life. I feel that society has a duty to question why things happen as they do and whether, in fact, science is being manipulated for the benefit of those making the most money.

I also feel that better listening and focusing on the whole person could help many people experiencing mental health issues. “Compassionate” sounds like a good word to describe how I’d like to be treated if I was going through trauma and distress.

Dementia mapping project - Powys

My colleague Sue Newham, who is the Engagement Officer for Powys Association of Voluntary Organisation's Health & Wellbeing team, talks to Jenny Hall about the Dementia mapping project she recently completed in Powys in this short video.

Find out more about the PAVO Community Connector team.

Read about the last Powys Dementia Network Day, which focused on housing for people living with dementia in Powys.