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Two years ago, I attended a Dementia Supportive Communities event in North Powys at which the idea of the Powys Dementia Network was first mooted. Three meetings subsequently took place through 2016 – 2017, in Knighton and Brecon. In late April this year I actually went to my first meeting of this network at Newtown Rugby Club. It was a brilliant opportunity to find out the latest updates about dementia services and activities across Powys.

The day was packed with speakers and networking opportunities so this summary is split into two blog posts. This first post will focus on the morning session, primarily important updates from a number of statutory agencies. The second will highlight the ongoing work of the voluntary sector, plus the day’s highly entertaining finale “Living with Dementia” from Frances and Jill, who between them have extensive experience of living with, and caring for people, who live with dementia.

Claire Powell, Community Connector at PAVO, and Trish Buchan, PTHB

Trish Buchan – Setting the scene for PAVO

Trish, who previously worked for PAVO as the Health & Social Care facilitator, now represents Third Sector Organisations at Powys Teaching Health Board. She has personal experience of supporting a close family member who lived with dementia, and encouraged all agencies to work together “to support people living with dementia to live well and happy lives.”

Alison Johnstone, Patient Experience & Community Involvement Manager

Alison Johnstone & Dave Coombs – Welsh Ambulance Services NHS Trust

WAST produced its three year dementia plan last year, regularly schedules Dementia Friends’ sessions for staff, and is recognised as a Dementia Friendly Community. The vision: “By 2020 we will be an organisation that responds to both the clinical and emotional needs of people living with dementia, their carers and families.”

Working to achieve this goal, Alison has a key role at WAST as she talks to people about what they think of the ambulance service. Here are some of the issues people living with dementia have raised:

  • I struggle to know when to call 999 and to deal with the process for call handling.
  • It’s complex. Different questions are fired at me. Call handlers need to slow down. To have patience. 
  • I need to be treated with respect – as an adult, not as a child.
  • Get to me quickly. Be calm and compassionate.
  • Realise the key role of carers when I am trying to access services.

Alison reported that WAST works closely with the Alzheimer’s Society putting in place suitable staff training. The other good news is that Ten Dementia Champions have so far been recruited across the service to raise awareness, and more are being sought.

Matt James and Dave Coombs of Welsh Ambulance Services Trust

Dave Coombs (also a volunteer with the dementia friendly Brecon Mountain Rescue Team) introduced us to trauma teddies, which are used to comfort ambulance patients, and the “Message in a Bottle” scheme whereby a person’s brief personal and medical history is stored in a bottle (provided by the UK Lions Clubs) in the fridge.

Neil Evans – Mid & West Wales Fire Service
Neil, Llandrindod Wells Station Manager, described how the fire service works to support people living with dementia who are at a higher risk of experiencing a fire. Staff at all fire stations have been trained as Dementia Friends. Using the Make Every Contact Count (MECC) approach, he and colleagues arrange free home safety checks, prioritizing those living alone, and people who are elderly, infirm, disabled or living with dementia. Neil described a scary scenario where someone who had used an Aga or Rayburn all her life put a plastic kettle onto the hob. 

Fire staff, now skilled in a range of areas, including: winter warmth, crime prevention, scamming, flooding, water safety, arson reduction, smoking cessation, slips, trips and falls, can when appropriate give advice on all topics. Group training is available for organisations as it is recognised that the voluntary sector is likely to have strong links with “the most high risk, hardest to reach” in the community. And – here’s an income generation scheme for groups – there is payment available for those delivering home safety checks.

Inspector Brian Jones – Dyfed Powys Police

After speaking on the importance of reporting hate crime, and introducing us to the force’s Strategic Equality Plan 2016 – 20, Brian asked us to give him some examples of likely incidents that police could be called to around dementia. “Misunderstanding a situation and reacting badly…” “There could be driving issues…” Telephone scams, domestic abuse and public order were also highlighted.

Brian explained that a person might walk over twenty miles in a day (there was discussion around terminology, “wandering” is not an appropriate term as people living with dementia walk with purpose). They could engage with others without anyone necessarily having any concern for them. Yet back home the family would be anxious and concerned for the missing relative. Searching for a missing person is a massive challenge over the large rural area that is Powys.

Police Community Support Officers throughout the county work hard to become known faces in their local areas, including at relevant groups where people living with dementia are supported to lead fulfilled lives. They understand that if people start talking about a different period of their life it is better to work with them. Call handlers are also trained to be aware of dementia as crime reports may not be all they initially seem… Someone may report that their car has been stolen – but it may actually be at the garage for repair, for example.

In South Powys the police are working closely with Brecon Dementia Friendly Community around a Dementia “buddy” scheme also known as Guardian Angels, inspired by a successful project in Wigan. Badges, wristbands or keyrings can be activated by mobile phone apps to display the contact details of close family members if people are found alone and in distress.

Questions to the panel

There is not enough space to cover all the issues the panel covered in any depth. I learnt that Community Connectors are asked to help if pets are left in an empty property, the police can flag repeat callers on their system, and that postal staff receive fire safety check training.

Chris Evans & Derek Johnston – Assistive Technology, Powys County Council

Assistive technology has a key role to play in the modernisation of health and social care services. There is already a vast array of equipment and technology available to support people to continue living at home following a dementia diagnosis (and a needs assessment) but Chris focused on telecare for this session. He described the benefits of technology:

  • It drives down costs.
  • It can prevent hospital admission.
  • It achieves a faster and safer return to home from hospital.
  • It delays admission to care homes.
  • The biggest benefit, which is consistently reported: it gives confidence/assurance to the individual and/or family member.

The Powys Careline “offers a 24 hour, 365 day service giving total peace of mind at the touch of a button”, whether on a neck pendant, watch or wristband. Chris described numerous detectors. Some could cleverly sense smoke or gas, and others a person slowly falling from their chair. Pharmacists refill smart medication dispensers as appropriate. GPS trackers provide links to Google maps to reassure family members of a person’s whereabouts. Different needs? Different kit. The range was overwhelming and very reassuring.

And, for anyone wanting to find out more, there is a fully kitted-out flat in Christchurch Court in Llandrindod Wells where staff are trained and assistive technology open days regularly scheduled.

Heather Wenban & Kate Rayner

Heather Wenban – Dementia Lead, Powys Teaching Health Board

Heather works closely with Welsh Government to ensure that there are improvements in dementia care. A new Powys Dementia Plan will attempt to reduce the stigma around dementia so that more people from an ageing population will not be afraid to access support from their GP around memory issues.

Heather’s other updates:

  • The memory service is undergoing a review to have parity across Powys.
  • There are two Dementia Support Workers in Powys, plus a dedicated Dementia Nurse.
  • Following the closure of the Fan Gorau Dementia Unit in Newtown a Dementia Home Treatment Team has been established.
  • Education programmes are in place – Carer Information & Support Programme (CRISP) and Cognitive Stimulation Therapy (CST).
  • Peer support is available in group settings, with knitting, gardening and Men’s Sheds all proving popular, and there is a dedicated carers’ group in Brecon.
  • Hospital staff are receiving RITA training (I can’t keep up with the acronyms!). This is Reminiscence Interactive Therapies and Activities.

Heather concluded by saying that there is much exciting work still to be done in the future around provision of dementia services.

Carol Hay, Engagement Officer, Health & Social Care, PAVO
with a trauma teddy & a sample “Message in a Bottle”
Many thanks to Carol Hay for organising the day! Look out for Part 2, when you can find out how the afternoon of our Powys Dementia Network day panned out.