Powys Dementia Network Day - housing

by Jen Hawkins & Jackie Newey

Health & Wellbeing / Mental Health Information Officers

On Wednesday 20 February we attended the latest Powys Dementia Network event at the Elim Church in Brecon. It was organised by our colleague Sue Newham, Engagement Officer in the team, and attended by a huge variety of organisations and individuals. These included Community Psychiatric Nurses from the Brecon Community Mental Health team, the Macular Society, Mid & West Wales Fire Service and Care & Repair Powys to name but a few.

We will try to capture some of the spirit and information from the day below, but if you would like to find out more and / or attend future events then please get in touch - further details at the end of the post. The last Network event was also captured for the blog in Powys Dementia Network event Spring 2018.

Overview - Heather Wenban, Dementia Lead Nurse, Powys Teaching Health Board

Heather emphasized the importance of continuing to raise the profile of dementia as we have been doing. It is high on the Welsh Government agenda with increasing numbers of people living with dementia as the population ages. She reminded us of the 6 pledges in the Powys Dementia Plan, and also highlighted the significance of working collaboratively with Powys County Council and the Third Sector to achieve the best possible outcomes for people living with dementia.

There have already been many achievements in Powys, including the introduction of the Butterfly Scheme on hospital wards, a rolling programme of dementia awareness training for health board and care home staff, and specialised RITA (Reminiscence Interactive Therapies and Activities) training too.

Heather noted the huge focus on housing in the new Welsh Government Dementia Action Plan for Wales. She is keen to share best practice with colleagues and work towards the goal of ensuring people can live well at home for as long as possible.

Making our communities and housing dementia friendly - Steve Huxton from the office of the Older People’s Commissioner

Steve began by addressing the discrimination and stereotyping that many older people living in Wales face on a daily basis. He said that older people need to feel valued and respected, to lead healthy active lives, to have their voices heard and be acknowledged as “experts by experience” in building communities for the future.

He is pleased to see the rise of dementia friendly communities in Wales, which can make transformative changes for people living with dementia, but recognised that there is a spin-off for communities which become better for all of us as a result.

Whether housing is provided by housing associations, the local authority or Third Sector organisations it is key that important questions are addressed such as - can people access transport, socialise with friends or enjoy green spaces? Steve believed that no one sector can do all that is required - it is important to look at innovative but practical solutions to meet the needs of the over 55,000 people who will be living with dementia in Wales in just the next two years. 

Housing is critical in all aspects of our lives - and creating warm, safe and accessible housing that allows people to live independently for longer reduces the impacts on stretched public sector services as well as improving individuals’ lives. It’s essential to recognise the importance of housing as more than just accomodation, it’s where our days begin and end, where each daily journey starts, it’s the heart of our world that allows us to live the lives we want to lead. We need to move away from theoretical practice and implement something that can make a big difference to people’s lives, creating a Wales that everyone is happy to grow old in.

Understanding housing support needs - Terry Flynn, Powys County Council

Terry is both a team leader for the council’s housing strategy and also a pensioner! After acknowledging the changing demographics of Powys whereby younger people move away for work and education whilst retirees choose to settle here in later years, Terry focused on two specific areas of his work: the bricks and mortar, and housing support needs.

The old sheltered housing model of the 60s and 70s is not fit for purpose in this day and age. Council and housing association stock is being reviewed and refurbished where appropriate to suit the needs of today’s aging population. He was shocked to discover that 30% of accommodation originally designated for older people was no longer suitable, for example, not accessible.

Terry went on to describe a new approach called Extra Care. Working with the health board and housing associations in Powys some of the care homes are being replaced by a different kind of provision. An example of this is Llys Glan Yr Afon in Newtown. Here people can live independently in their own homes but be reassured that extra help and support is available throughout the year. Similar projects are being developed in Ystradgynlais, Welshpool and eventually Brecon.

Terry championed the “unsung service” of Housing Support Needs, who in conjunction with voluntary sector agencies work for one purpose - to ensure people can live independently in their own homes, “to make sure they are on an even keel.”

Sharing information & networking during the day

Approaching dementia differently - Sam Bolam, CEO Dementia Matters in Powys, with Frances Isaacs and Gill Garner

Sam asked us all to think if there is a different way of doing things when working to improve the lives of people living with dementia. “We need to have a beginner’s mind and look at how we can constantly improve and change what we’re doing. It is time for a dementia revolution.”‘When we pause, allow a gap and breathe deeply, we can experience instant refreshment. Suddenly, we slow down, and there's the world,’ Pema Chodron

Sam highlighted the need for change in how we approach supporting people with dementia. It’s not acceptable to just adopt a technical approach, but to recognise and adopt a person centered approach, changing from ‘what matters,’ to ‘you matter.’’ Considering person centered approaches like colour coded tarmac to support people in their daily journeys to and from their homes. Sam showed some stereotypical images of people with dementia and challenged the preconceived view held by many, she called for a dementia revolution, looking at supporting the whole human. 

There followed a conversation between Frances (who lives with dementia) and Gill (who cared for her father who lived with dementia) about some of the difficulties they have and do face and strategies they have used. Frances described, very entertainingly, how she once found herself in a broom cupboard instead of a toilet, and her “Psycho” experience when trying to extricate herself from a steamy shower. But, she said, “there is a life I had never imagined between diagnosis and before I go down the pan.” She went on to describe some of her most rewarding experiences as a volunteer with Dementia Matters in Powys, her love of the open air, and the fun times at Brecon’s Meeting Centre. Frances also impressed upon us that “it is important that you do the things that you love, that are you.”

Information sessions

Alzheimers’ Society’s New Deal on dementia 2017 - 22, and it’s new service model, Dementia Connect - Kerry Phelps

Kerry Phelps introduced the Alzheimers Society as the leading support charity for people with Alzheimers. As an organisation they’re increasing their reach irrespective of circumstances and engaging as many as 1000 people in their consultation processes. She introduced their new service ’Dementia Connect,’ a staged transitional process with five different tiers.

Dementia Connect was trialled in the Pennines, then Birmingham and is now being rolled out in Wales as an early adopter model. The programme followers a befriending model with a dementia support worker assigned to support people with their dementia journey from diagnosis, through to end of life. In Powys Anne Clark is the point of reference for South Powys, whilst Alvine Stewart has been newly appointed as the point of reference for North Powys, both posts offer 28 hours of support a week and are currently based in Talgarth.

The first point of access to the new service is by telephone call to a professional support hub, staffed by trained dementia workers, where each caller has the option to talk to a Welsh speaking support worker should they require it. Most people are able to access support and receive the support and help they need with triage and generalised support. However 70% of people whose queries cannot be dealt with there and then are escalated to the next level of tier 2 support.

Tier 2 support workers offer one to one support in the home with commissioned care plans. After the Tier 2 support has finished a KIT, ‘Keeping In Touch,’ support worker will proactively be in contact six months after the cessation of support to monitor progress and assess whether further support is required. This tiering of service is designed to prevent ‘slippage,’ of people falling through the net and not accessing the support they need.

Access to the service is possible via several pathways. The online referral portal is popular with 90% of current referrals from HSC professionals. Side by Side is a similar model to the Befriending model with the capacity to refer people to the service. Dementia Connect is slowly building momentum in Wales with 30 callers since January to the Welsh speaking support line. There is a wealth of information online with 100 factsheets on the website that anyone can easily access Publications and Factsheets Another useful service provided as part of Dementia Connect is an online talking point forum, lead by people with dementia and their carers, putting people at the heart of the service and helping people to truly connect, sharing support through lived experience, Talking Point - Online Community

Sue Newham, Engagement Officer - PAVO, with Frances Isaacs who spoke about living with dementia

Ambitions in later life

Gill Garner & Frances Isaacs facilitated this workshop looking at practical solutions for people living with dementia.

Finding out about new activities in local areas for people living with dementia - Jenny Hall / PAVO

Watch out for a separate blog post about this recent research project.

Q & A session

The afternoon session gave everybody attending the conference the chance to share their views and opinions about the network and how we shape and develop it moving forward. Sitting in a circle gave a real sense of coming together, connecting and sharing, rather than a “contribute from the floor, more formal feedback” session. The session began by asking what is the purpose of the network? How do we drive it forward? How do people have their needs met and what do we focus on next?

The consensus of opinion was that the service users are our priority and as such they should be more proactively involved in the network, giving us the insight and opportunity to take more purposeful action on specific services. It was suggested that a pre-meeting consultation could be held with a dementia steering group to determine what our focus should be. There was also a felt need to forge stronger, valuable links with other groups working towards a common goal such as the Alzheimer’s Focus on Dementia groups.

To actively engage people with dementia and to be led by their needs and requirements was commonly felt to the best way forward, considering how we actively engage communities, focussing on tangible issues that make a real difference on a daily basis. Recognising that we all need a plan for aging, asking ‘Are you OK? Can I help,’ are questions that can make a real difference to people’s lives.

Trish Buchan, trustee for Powys Teaching Health Board, summarised the day by saying that ‘Today is a giant step, we have moved forward and come a long way. PAVO’s Engagement Officer Sue Newham agreed and added, ‘big picture thinking starts with lots and lots of steps to get there,’ Lets see what else we can do to make a real difference to people’s lives and change what Frances Isaacs, an attendee living with dementia, calls ‘pyschobabble,’ to productive babble.

To sign up to the Powys Dementia Network and find out about future Awareness Days then please contact Sue Newham, Engagement Officer at PAVO, by emailing sue.newham@pavo.org.uk or ringing 01597 822191.

When I grow up

by Suzanne Iuppa, Community Connector — Llanidloes (2nd from left)*

I grow old … I grow old … 

I shall wear the bottoms of my trousers rolled. 

Shall I part my hair behind? Do I dare to eat a peach? 

I shall wear white flannel trousers, and walk upon the beach.

The Love Song of J. Alfred Prufrock, by T.S. Eliot

    

What do you want your older age to feel like, sound like, look like?

I’ve spent much time thinking about this on my long drives working around the very beautiful countryside of Powys. I’ve worked for Powys Association of Voluntary Organisations (PAVO) now for six months as a Community Connector, linking older people in the county with services to improve their health and wellbeing. 

I moved here from Flintshire in September 2016, where I lived for 25 years and raised all three of my children as a single mother. My boys now live in the four corners of the planet and we joke (well, it is my favourite fantasy) that when I get older I will wing in with my Mary Poppins umbrella, all sprightly and fun, right when my beloved daughters-in-law can’t face another meal prep or load of washing, to look after my many grandchildren in turn, in different countries. My loving offspring will have a very small but beautiful granny flat in each of their houses for me to make magic in during my regular, seasonal visits. When I am not on Nainey duty I will be in my stunning but tiny (ie: low maintenance) cottage with the view at the edge of the Snowdonia National Park. I’ll have dinner parties, write stories, make crafts, feed the birds, and still make the long walks to the pub or garden centre. Or perhaps even take my trusty bike. I’ll thrive. I’ll be happy.

That’s if: if in future I’ll be able to travel easily to see my family, if I develop no long-term health conditions which sap my energy, if my children do indeed have children, and if my daughters-in-law will want my help on a regular basis.

I’m good at being flexible, but, with my family living at a distance and most of my friends being a good ten or fifteen years older than me (I was a young Mum, and my friends and I raised our children together) chances are, if my fantasy does not play out, my older age could be at risk of feeling lonely. In Powys there are plenty of places like my village, small tight-knit rural communities where children are living at a distance from parents and many people are of an aging population, all developing complex health problems as their age advances, in tandem. We might all want to be social! But for one reason or other, it may be hard to do. 

I help many people in Powys whose friends are not able to assist and whose family are not present, by linking them to befriending groups or ‘good neighbour’ schemes. It’s very important these schemes are well supported with funding and volunteers. Because — loneliness is not a condition we want to allow in our communities. The Older People's Commissioner for Wales, Sarah Rochira says: "Loneliness is a major Public Health problem here in Wales. We can all help — one day it could be us."

Loneliness has an effect on mortality that is similar to that of cigarette smoking. It is associated with poor mental health and conditions such as cardiovascular disease, hypertension and dementia.

Loneliness has a much wider Public Health impact too: it is associated with a number of negative health outcomes including mortality, morbidity, depression and suicide, as well as increased health service use.

Most of my work is centered around helping people feel listened to, and responding to people’s individual needs, particularly older people living with a sensory loss, cognitive impairment or dementia, those who are carers or who have mobility issues. It seems in Powys these older people are most socially isolated. In addition, the people I have worked with have reported:

• Loss of trusted relationships.
• Loss of privacy and dignity.
• Being a full-time carer with little social mobility.
• Poor access to a car or public transport.
• Not being able to run a home by oneself anymore.

The answer is not the NHS to any of these problems; either primary or secondary care. But… quite often that is where lonely older people end up. If we think of primary healthcare, we can also think of primary health and social services for older people. These should be first in line for funding and support for to prevent hospitalisation. These are: appropriate housing (including residential and nursing care) day centres, personal care, befriending, community transport, practical services such as shopping, cleaning and gardening, and social links.

We need to listen better to older people’s life stories and their wishes to create an enabling environment for all, so we can work together to provide the primary social services. Understanding the sense of loss would be a start. Veronica Jarman, day hospital sister at Llanidloes Day Hospital and a Wales Nurse of the Year, explains: "It’s grief — loss of partner, social position, income, friends… the grief can be overwhelming."

Active and reflective listening are keys skills in grief therapy, and could be an early response to people asking for help with loneliness, before accessing NHS services at a crisis moment.

The Royal College of Speech and Language Therapists, for example, has emphasized the link between the ability to communicate clearly with an individual’s ability to make informed decisions, to access services, enjoy their rights and overall, the dignity and respect that they experience.

Of course the older people in our society have lived through unprecedented change. For all the developments in communications and technology, the needs at the start and end of life are still best met through personal interactions. 

Our society is ageist — the only people really admired and in the driving seat in our society are from age 25 — 60 years. Like puberty, older age is a time of radical transformation for many; complete change. Whereas in previous societies elders had specific roles as guides, healers, mediators, correspondents, even dispute resolution specialists, because their amassed life experience was held in great esteem, now we tend to disrobe older people of roles and responsibility, in our families and in society generally. I’ve no doubt this disengagement has an effect on cognitive function. What would happen if we were able to advertise for older people to fill specialist roles in our community — designers, garden and horticulture, childcare, farming practices with wildlife conservation, flood prevention, town planning, holistic healing, dance events, history projects, clothes manufacture, community transport, language classes? What if people 65 years+ were the only ones to fit the bill, because of their wealth of experience, their time and their care?

Perhaps the Nainey duties and the dinner parties could keep me at the top of my game, for longer. I’m joining some craft guilds just in case — oh and my local town choir! I’ve even started an online course in herbal medicine. Still, I wonder if my daughters-in-law will be able to recommend a really good hairdresser in each country? I hope so!

To contact Suzanne for further information about her work as a Community Connector, please email suzanne.iuppa@pavo.org.uk or ring 01597 828649.

* The photograph also features (L-R) Carla Rosenthal — Community Connector in Knighton, and Melissa Townsend — Volunteer Officer PAVO.

A visit from the Older People’s Commissioner Office

Earlier this summer Kate Hughes, who works as the Engagement Coordinator for the Older People’s Commissioner for Wales, visited some of my colleagues at PAVO to find out more about our work. She later wrote a blog post about her visit for the Older People’s Commissioner for Wales’ website and with her permission we republish it here. In the post Kate highlights “some of the excellent work underway in Powys that is making a big difference to people’s lives.”

I visited Powys Association of Voluntary Organisations (PAVO) in Llandrindod Wells to spend the day with Freda Lacey, PAVO’s Mental Health Participation and Involvement Officer, and Barbara Perkins, their Community Voice Officer. They were keen to tell me about some of the outstanding work going on across Powys, supported by PAVO, which helps organisations and improves lives.

Powys is the largest county in Wales, covering a quarter of its land mass, but it is also the least sparsely populated with an average of 26 people per square kilometre. The result is a beautiful rural landscape with soaring mountains and acres of wilderness to explore. There are several population centres, including Newtown, Welshpool, Llandrindod Wells and Hay-on-Wye, but many people live in remote areas that are hard to reach. The result is a patchwork of services that cover the county and a real postcode lottery about what is available to you based on where you live. The Commissioner often talks about people being in the ‘lucky’ or ‘unlucky box’ and where you live in Powys and whether you have easy access to transport, can be critical factors in determining which box you are in.

The importance of being able to access transport is highlighted by the fact that there are no District General Hospitals in Powys, so people often have to travel long distances and across borders for diagnosis and treatment. They also told me that older people whose spouses or partners are very ill in hospital often struggle to make the journey to Birmingham or Wrexham and that there have been reports of discharge in the very early hours and a lack of discharge planning.

Rural isolation is also a huge challenge as people often live at some distance from friends, family and community services. There have been projects set up to tackle this and to help support people’s mental health and wellbeing. Freda and Barbara had time to tell me about some of their favourites:

1. Mid Wales Food and Land Trust: Good Neighbour Project

This project helps people to do their shopping. Volunteers phone up to find out the items people need and let them know about special offers etc. They will then shop locally, deliver and unpack the items people have ordered.

2. Powys Mental Health Participation and InformationService

This is a wide-ranging service that has really helped service users to get involved in designing and delivering mental health services.

They bring services/(senior managers) and service users/carers together in local communities so they can discuss and resolve any problems, if possible, locally. This is a great example of using patient experience, rather than complaints, to drive improvement.

3. Powys Befrienders

This service focuses on people over 50 who are lonely, isolated and risk losing independence.  Volunteers work with people for up to a year and support them to become more involved in their communities. Once volunteers have been matched, they help people to identify groups and activities they want to try and support them to try out them out. They try to help people find social activities they can continue to enjoy long after their involvement has ended. This project is funded by the Big Lottery Fund, and is running until October 2016.

4. Dementia Supportive Communities

There are a range of initiatives to help Powys become a more supportive place for people with dementia to live. Hay-on-Wye/Brecon  is trailblazing the way to implement Dementia Friendly Communities in Wales.  The aim is to help people and organisations in local areas to better support people with dementia. An example of some of the initiatives linked would be the Butterfly Scheme, which provides training in dementia care within hospitals and is based on the “Reach” programme.

Many thanks to Freda and Barbara for a fascinating day. I have just skimmed the surface of Powys in this blog, but I was struck by the range of innovative solutions people in Powys have found to providing services in such a challenging landscape. I would like to end with a final thought from the Commissioner, “"When we get it wrong, the price is never paid by the service, it's paid by the individual and is far too high".

The situation in Powys may be challenging, but it is heartening to see that so many people are trying to get it right.

Tell us what you think in the comments box below about some of the issues that Kate has raised in her blog post.