Dementia Awareness Week 2017

Hot on the heels of last week’s Mental Health Awareness Week comes this week’s Dementia Awareness Week, 14 – 20 May. There are 45,000 people living with dementia in Wales and the charity Alzheimer's Society Cymru is encouraging everyone to 'unite against dementia’: “Dementia is set to be the 21st century’s biggest killer. But together we can raise awareness, offer help and understanding, and urgently find a cure.”

There’s a lot going on in Powys this week but this blog post is just going to focus on a couple of initiatives that are running to help support people living with dementia in the county.

Dementia Friendly Shopping

Jeni Hall, who is the PR Ambassador at the Sainsbury’s Welshpool store, recently got in touch to tell me about the Dementia Friendly Shopping initiative which started at the store earlier this year. Jeni explains:

“At the end of last year, we pledged to become a Dementia Friendly store. Since then, one of our colleagues has become a volunteer Dementia Friends’ Champion and delivers Dementia Friends Information Sessions to all other colleagues.

We have now committed to having a Dementia Friendly Shopping Time once a week on a Wednesday between 2 - 4pm.

All colleagues working during this time will be a Dementia Friend, and will be available to assist anyone who needs help. Stock cages will be kept off the shop floor, tannoy announcements will be kept to a minimum, black mats at the front of store will be replaced with green mats, chairs will be available and we will have a ‘slow checkout’ to use. We have also put coin identifying cards on our tills to help with recognising the different coins.

Everyone is welcome to shop during this time”.

Dementia Friends’ training for the PAVO Powys Connectors’ team

“The Alzheimer’s Society’s Dementia Friends programme is the biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, talks and acts about the condition. Dementia touches the lives of millions of people across the UK. Dementia Friends was launched to tackle the stigma and lack of understanding that means many people with the condition experience loneliness and social exclusion.”

Carol Hay and Suzanne Iuppa

I joined a PAVO Dementia Friends’ training session yesterday at the start of Dementia Awareness Week. Staff in the Powys Connectors team were being trained by PAVO colleagues Carol Hay (Health & Social Care Engagement Officer) and Suzanne Iuppa (a Powys Connector based in Llanidloes). 

They started the session by asking us to write down the first word which came into our heads when thinking of dementia. Some of the words we came up with included: Scarey. Mum. Numbers. Old age. Memory. We all spoke about our words… some of the stories were already very personal and moving… we discussed initial perceptions… the way dementia is handled by the media… how we are constantly bombarded by dementia stats… and whether our words had positive or negative connotations.

Playing a game of Dementia Friends’ bingo we learnt more about the “Five things you should know about dementia.” The discussion that followed led to yet more personal stories, about family members with young onset dementia, about some of the many other different types of dementia (yes, the numbers: over 200 sorts apparently) and how twiddle muffs can help bring down levels of frustration amongst people living with dementia.

We pondered over why people might delay going to see their GP if they started to experience problems with their short-term memory. Perhaps they would be fearful of having a diagnosis and the implications of that… what it would mean to their day-to-day lives… their jobs if they were in work… how their friends and family would react….? But the sooner someone is diagnosed the sooner adaptations can be made by themselves and those around them.

Dementia Friendly Communities are being developed all around Powys so that people can be more supportive of others living with dementia and to help remove the stigma. We wrote about some of these communities in the North and the South already.

Time for the next exercise at the Friends’ training session. This involved working in pairs to write down all the steps required to make a cup of tea! As a non-tea drinker, who never gets it right brewing cuppas for family and friends, this sounded like it could be useful to me too! Between us we had anything from 20 – 35 steps, depending on whether herbal teas and hand-knitted tea cosies were roped into operations!

Following the exercise we discussed how action could be taken to help people live life more independently. If a person living with dementia was trying to boil water in an electric kettle on a gas hob then maybe it was time to consider choosing a new whistling kettle rather than a residential home placement. We learnt that there is a property in Christchurch Court, Llandrindod Wells where assistive technology is on display – contact Powys County Council at the Gwalia in town for further information.

And we rounded off the day with two analogies…. First thinking of the brain like a set of Christmas tree lights – they might go out, or flicker, or dim, but in no particular pattern. And secondly, as a bookcase… the most recent memories are on the top shelf, with those from further back towards the middle and the base… when the bookcase starts to rock it’s those books at the top which tip first… so someone living with dementia might be living in the fifties or sixties on a day to day basis… which is where contact with memory boxes can be so valuable.

If you are interested in becoming a Dementia Friend or Champion there is a training session with the Alzheimer’s Society at our offices in Llandrindod Wells on Thursday 1 June. You can find out more on our website.

Meanwhile, what have you been doing for Dementia Awareness Week? We’d love to hear from you in the comments box below.

Mental Health Awareness Week 2017 - in Knighton

Yesterday Phil and I set up an information stand in Knighton Library to coincide with Mental Health Awareness Week 8 – 14 May. The annual awareness week has been hosted by the charity the Mental Health Foundation since 2000 and previous themes have included relationships, mindfulness and sleep deprivation. This year’s theme is Surviving or Thriving?

“We all have mental health. Good mental health is an asset that helps us to thrive. This is not just the absence of a mental health problem, but having the ability to think, feel and act in a way that allows us to enjoy life and deal with the challenges it presents. Yet it can be easy to assume that ongoing stress is the price we have to pay to keep our lives on track. It is time to challenge that assumption”.

Following the sad loss late last year of a young man to suicide in the Knighton area, local people have been keen to raise awareness of the support that is available to people experiencing emotional distress of any sort and for any reason. Carla Rosenthal, who was at that time a Participation Officer in our team, and lives in the area, has been working closely with local organisations such as Knighton & District Community Support, Volunteering on Prescription and KINDA (Knighton Initiative for Dementia Action), along with the people of Knighton, to help organise activities:

“Events through MHAW aim to unite the community in Knighton through music, socialising and TALKING! Many local businesses are to host events but are relying on as many people to come and support them and raise awareness for a cause that's affected everybody”.

Carla suggested our team set up an information display in Knighton Library for the week alongside one from the mental health charity Mid Powys Mind. MPM holds Outreach Sessions in Knighton every Friday, 1 – 3pm, at St Edwards Community Room, St Edwards Close, Knighton. Doreen wrote about the group in October last year in Thank goodness it’s Friday in Knighton!

As the theme for this year’s Mental Health Awareness Week is Surviving or Thriving? we decided to ask visitors to the library to tell us what helps them to thrive. People of all ages engaged in a conversation about emotional wellbeing, describing what helped them feel better, and some common themes soon emerged!

Finding paid work was one person's answer to thriving better emotionally. Another woman told us that her dogs made her happy: "They need us and we need them." She went on to describe the great impact Nature has on her wellbeing and recommended reading a book called "Walden" by Henry David Thoreau. Published in 1854 it documents the American's experience of immersing himself in the natural world whilst living simply in a small cabin for 2 years, 2 months and 2 days in Massachusetts. Thoreau observed: “Happiness is like a butterfly, the more you chase it, the more it will evade you, but if you notice the other things around you, it will gently come and sit on your shoulder.”

In fact, books were a common theme in boosting emotional wellbeing in the people we talked to - perhaps not unsurprising considering we had based ourselves at the local library! More in-depth conversations with people revealed an uneasiness with the way that the language of "illness" is used to describe those experiencing distress. One woman said: "Nothing is black and white. There is a spectrum of greyness." We discussed a recent BBC Horizon programme - "Why did I go mad?" in which Jacqui Dillon speaks about the traumatic incidents in her childhood which led her to experience hearing voices. Our library visitor had found the programme fascinating, particularly the Nature-Nuture debate. She said: "Even if 10% of people are predisposed to experience distress - they still need to be in the right, rather the wrong situation, for it to actually happen." 

Other visitors to the library told us how "mind over matter" - the sheer determination to "keep going" - helped them to maintain high spirits. Life could throw all kinds of obstacles at us. There could be challenges to our physical health, or withdrawal of local services due to cuts, but going out into the community and talking to others - getting on with life - really seemed to help.

Gardening cropped up regularly when we asked people what helped them thrive. But Carla had taken one step further, and celebrated World Naked Gardening Day last Sunday 7 May! She had planted rocket, lettuce, climbing beans and watered tomatoes - lucky for her the weather had been gorgeous that day!

Not naked at Knighton Library however! Carla is actually shown wearing one of the T-shirts funded by Knighton & District Community Support Project which were circulated to help raise awareness.

Two live music events have been organised in Knighton to take place this weekend to coincide with Mental Health Awareness Week:

Saturday 13 May

The Barebacks at The Horse & Jockey Inn, 10pm - 12am

Sunday 14 May

Open Mic Night George & Dragon Inn 8pm - 10pm

Walk and Talk - a dementia initiative

This week’s guest author is Heather Wenban, the Project Development Officer – Dementia Care, at Powys Teaching Health Board. I first heard Heather speak at the Dementia Supportive Communities event in North Powy in 2016, and later found out that she had set up a “Walk and Talk” group in the area for people with dementia, those close to them, and staff members. Following a successful season of walks in 2016, this year’s programme is about to start with the first walk scheduled to take place during Dementia Awareness Week 14 – 20 May 2017. Heather says: “the walk will take place in Newtown leaving the Gravel Car park (the smaller car park) on Tuesday 16th May, at 2pm. This will be followed by tea in the Elephant & Castle. All welcome to join the group.”

Over to Heather to tell us more about how the Walk and Talk group came about:

Whilst I was working as part of the Adult Mental Health team in Shropshire I became involved in the regular Walk & Talk groups they initiated, during the summer months. They were facilitated by a variety of staff members from the clinical psychologists, mental health nurses, occupational therapists, and support workers and normally had 3 staff attending each walk.

Heather Wenban

The benefits were obvious from the outset. Some were excited about where they would be walking that day and the challenge it may bring, others may arrive looking a little depressed and apathetic and wondering why they had come and others came for the meal we would have when we finished!

When I began my role as Dementia Adviser nurse in North Powys, and having seen the benefits of this type of group, I believed that this would be appropriate for our older population and those living with dementia and we could adapt it to meet their needs.

The young onset dementia nurse and I discussed the idea with our carers before running the group to gain a feel for their interest and it was met with very positive comments. The feedback we received whilst it was running was also very positive and they didn’t want it to end as the autumn months were approaching! They felt it gave them the opportunity to talk with others in similar positions and doing it informally, as they were walking, encouraged openness. The carer felt it made the person with dementia calmer and they appeared to feel relaxed and felt no pressure to participate. They would enjoy listening to others talk and always enjoyed walks where water was visible.

As staff we would have background knowledge about the person and this enabled us to talk with them about things that mattered to them. For example, we might talk about their previous work experience or hobbies that they used to enjoy. One of our carers was a local historian and he shared information about the local communities in which we were walking. It would also alert us to any potential crisis situations and we were able to address any issues and reduce the risk of carer breakdown and potential hospital admissions.

It is so important to engage people with dementia in social activities that enrich their lives and stimulate engagement. It benefits mental and physical health and gives people a sense of well-being and improves their quality of life.

Research now supports improved:

Emotional state, reduced stress, agitation, anger, apathy and depression, physical health, skin health, fitness, sleeping and eating patterns, verbal expression, memory and attention, awareness, multi-sensory engagement and joy, wellbeing, independence self esteem and control, social interaction and a sense of belonging. (Greening Dementia 2012).

These are two quotes from the person with dementia and a carer's perspective from the Natural England commissioned report “Is it nice outside? – Consulting people living with Dementia and their carers about engaging with the natural environment” (2016).

“What it is, the fact that if you are out in the open area, it brings a whole new perspective to how you feel, you are not in an enclosed space indoors where you are thinking well, this is my world, that’s their world out there. You go out into their world, as one might say, you enjoy walking, swimming whatever, anything which gives you more exercise to the body, actually exercises the mind as well and fresh air is excellent for people with dementia of any sort because mine should be getting worse all the time but it’s not. It is staying stable and as a result I am still walking, volunteer walk leader and I thoroughly enjoy it, I now walk about 60 miles a month on average.”

“So we just used to walk the streets literally just walk round and round and round until he felt better and… it could be any time of the day or night and that really helped him to be outside… it helped him to calm down again and I don’t know how it worked but it did I guess it just put his mind in a different place.”

The benefits of this group are obvious from both a research perspective and for the mutal benefit of carers and the person living with dementia, in maintaining both their physical and mental health.

Many thanks to Heather for telling us about the Walk and Talk group in North Powys. As soon as we have further dates for the 2017 season they will be added to the Powys Mental Health website events calendar.