My yesterdays are disappearing and my tomorrows are uncertain

By Steve, Leeds Older People’s Forum Community Correspondent

Hi my Name is Steve I’m 69 years old and I would like to explain what it is like to experience a decline in your ability to think, remember and make decisions.

I found it very interesting the way Gary A. a member of US against Alzheimer’s explains about the condition:

“Early stage Alzheimer’s begins with episodes of memory lapse progressing to a diminished ability to reason and problem solve at a level achieved in the past.  As you re-evaluate what you now have control over, you must adjust in order to meet your needs via different pathways than you had previously.  Your choices are different and unfamiliar.” *

Carpe Diem

This is my third year of treatment and they still do not know the type of Dementia I have due to the complexity of my case. Still, you must learn to live with it and seize the day.

Still Alice

On 14th February 2018 I went to the West Yorkshire Play House to see a play about Dementia. It’s a heart-breaking story, and the cast perform it with grace and commitment.

No one more so than Sharon Small, who, in a wonderfully unguarded performance, captures the increasing frustration and panic of a capable woman.

As the illness takes hold, she gets lost in her own house and goes to work in her dressing gown; “I miss myself,” she says simply.

What Do I Live For?

My yesterdays are disappearing and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I will forget that I stood before you and gave this speech.

But just because I forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.

It was just at this point in the play I realised that this was a pivotal point in the play for me this was a story of my own journey with Dementia.

Seize The Day

I urge you to go and see this play as every three minutes someone will be diagnosed with dementia. Everyone is busy, and I understand this along with other commitments you will always find a reason not to do something. Listen to the voice in your head and go you will not be disappointed.

This is one memory I will try to remember for as long as I can.

* https://www.usagainstalzheimers.org/stories/7200

Volunteering with Dementia Friendly Leeds

By Caroline Turner, Dementia Friendly Leeds Admin Assistant

It’s hard to believe that it has been a year now since I first started volunteering for Dementia Friendly Leeds as an Admin assistant.  After retiring 3 years’ ago I wanted to step out of my “comfort zone” of 30+ years (office, spreadsheets etc.) and do something that directly helped people, and connected with them.

Having become a carer for my (still fairly independent) 87-year old mother over the years, I felt I had a bit of understanding of the challenges of later life, so I got in contact with Age UK.

The Role

I took on a role with their Information and Advice service, visiting older people in their homes and helping them apply for Attendance Allowance (a daunting 32-page form!), as well as giving other benefits help.  In the course of these visits I meet a huge variety of wonderful people, most of them living with physical and/or mental difficulties, often with little or no help.

I have become more aware of the impact of dementia on daily life, but also how much people living with dementia could still contribute.  For example, I met a couple where one partner was living with physical disabilities and the other with early stage dementia, each of them supporting the other, with one person’s weakness being the other’s strength.

Something Was Missing

Perhaps the only drawback was that I found I was missing the social parts of being in an office.  In addition to carrying on the one-to-one volunteer work at Age UK, I decided to seek out an additional, more office-based role in the same general area.

I saw the vacancy with Dementia Friendly Leeds advertised online, and began working a half day a week at the Leeds Older People’s Forum office, where staff from Time to Shine and Volition are also based. It has been a very enjoyable and interesting experience, in one of the nicest offices I have ever come across!

The Challenge

The main challenge for me has been becoming familiar with the work of Dementia Friendly Leeds and the variety of different organisations it works with, as well as gaining an understanding of the challenges facing those living with dementia.  Putting together the e-newsletter has really helped with this, and I have been amazed at the number and variety of initiatives that are going on in our city.

I have helped out at a Dementia Cafes event, where I met some of the people involved, and I have also attended a DEEP group, meeting some of those directly affected by dementia, and hearing their experiences.

The DEEP Group
Nancy, Peter and Marlene who are all members of the DEEP Group

 

At the DEEP group I was particularly struck by how many people attended, all at different stages of dementia, even when getting there was quite difficult for them.  It made me realise that dementia affects different people in different ways.  One lady living with dementia was very articulate and contributed frequently, even if occasionally repeating herself.

Changing my Perception of Dementia

Working at Dementia Friendly Leeds has certainly changed my perception of dementia.  I remember attending a Dementia Friends session and understanding for the first time how dementia affects someone emotionally as well memory-wise.

Realising that a person’s emotions persist even as their memories are disappearing, made me resolve to never treat a person with dementia any differently, just because they no longer know my name or what our relationship is.

I have recently been both moved by and full of admiration for Wendy Mitchell, who is living with early onset dementia, but has been able to write an online blog for the last three years.  Her book, “Somebody I used to know”,  based on this blog is due to be published soon, and is being serialised on Radio 4.

My Advice

If I have any advice for others looking to do voluntary work after retirement, it would be to go for what interests you, but be prepared to end up doing something completely different from what you imagined! And because every volunteer role is different, you might find that you want to take on two.

Making Later Life Better in Leeds

By Joanna Volpe, Leeds Programme and Partnership Manager, Centre for Ageing Better, Age Friendly City Programme

 

If you were to draw or sew a picture of what your home town means to you, what would it look like? I recently visited a group of ladies at a weekly social event called Heydays in Leeds who were doing just that.

What struck me was that all the pictures they embroidered were of their homes, their street, where they brought their families up. To me, the sewing session illustrated clearly what’s important to people in later life – their houses, being involved in their community, and being able to be active and travel around it.

These three areas are set to be the focus of a new partnership between Leeds City Council, Leeds Older People’s Forum and the Centre for Ageing Better. The partnership will build on Leeds’s existing commitment to be an ‘Age-friendly City’ and ‘the best city to grow old’ in. Over the next five years, we want to apply evidence to make changes that lead to a better later life for older residents in Leeds, now and in the future.

Your home

We know that most people in later life want to stay in their own homes and spend more time in their homes and their neighbourhoods than any other group. To age well, those homes need to be safe, warm and close to loved ones. Centre for Ageing Better recently published evidence showing that adapting homes can improve their suitability and keep people well for longer by reducing falls and accidents. However, for the majority finding out where and how they can have their homes adapted, and whether they are entitled to support with funding those home improvements, isn’t straight forward.

Older people in Leeds have told us that they want information and advice about their housing options – an area that we plan to explore further in the New Year. We want to understand what, how and when people seek advice about where they live, and what sorts of factors motivate people to act on the information they receive.

Your community

Although the building is incredibly important, what often makes your home a place where you want to stay is your community, the things that are going on around you, and of course being able to see family and friends. But this inevitably requires travelling, perhaps to neighbouring areas for health appointments, to visit friends or take part in community activities such as the Heydays club. People in Leeds have told us this can be difficult – particularly those shorter journeys.  In fact some people said it’s easier to travel out of Leeds than between areas.

That’s why one of the projects we have initiated is to look for new solutions for transport and connecting communities in Leeds. We’re really excited about this and will be reporting on our progress later in the year.

Acts of Neighbourliness

Being involved and contributing to our communities, whether through volunteering or just being neighbourly, is good for our wellbeing and an important source of confidence and purpose whatever our age. There is evidence that it can also result in an increase in the number and quality the relationships we have.

We know that many people in later life make significant contributions to their communities and we want to see more people able to access the benefits that volunteering brings.

So, part of the work we will do in Leeds this year will be to look at the opportunities over 50s have to getting involved in voluntary and community activity, what motivates them, and what are some of the barriers they might face. Using what we have learned in Leeds, we want to encourage others, such as councils, charities, and businesses – in Leeds and across the country – to provide people in later life with more opportunities and support.

For updates on this work follow @ageing_better or sign up for Centre for Ageing Better’s newsletter on their website www.ageing-better.org.uk

You can also contact Joanne Volpe who is supporting the work of the partnership at joanne.volpe@leeds.gov.uk

Making a difference with Dementia

By Sarah Goodyear, Dementia Friendly Leeds Campaign Manager

‘See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination’.
– Ralph Marston

Dementia can bring stereotypes. Many people have preconceptions about what a person with dementia can and can’t do. You can’t work, you can’t go out alone, you can’t do new things. Yet I know a group of people who might surprise you.

In Leeds we have a ‘DEEP group’. No, it’s not about discussing really deep topics. It stands for ‘Dementia Engagement and Empowerment Project’. It aims to empower people with dementia to increase awareness and services locally.

Our local Leeds group is called ‘Up and Go’. Our group members live with dementia and give guidance to businesses and services in Leeds. They also raise more positive awareness about living with dementia.

“I will forget today, but that doesn’t mean that today doesn’t matter”
– Lisa Genova, Still Alice

On 16th October 2017, four members of ‘Up and Go’ DEEP group and our Dementia Friendly Volunteer, Rebecca, took part in the student ‘Tech Challenge’. This challenge is run by Premier Farnell in partnership with Leeds Beckett University and Ahead Partnership.

It brings together students from colleges and schools across Yorkshire. They design and create innovative technology for people living with a condition.

The students are encouraged to talk to a group of people living with the condition chosen for that challenge. This year, the condition was dementia.

“I’ve got lots of ideas for the students. I’ve been writing them down”
– Marlene (DEEP member)

We arrived at Leeds Beckett at 10am and were led into a lovely, grand room and given a lovely, grand cuppa. We then split into two groups to talk to students about dementia throughout the day.

The students asked our member’s for their own experiences of dementia. The students also received feedback on their technology ideas. Below are some of the insightful questions and answers we had throughout the day.

How does dementia affect you?
  • Marlene: I forget to put oven gloves and burn myself. I also can’t judge how full liquid is in a regular cup – coloured cups are easier. Black mats are also difficult, they look like holes.
  • Bob: Me too, black mats are difficult. I poke them with my stick to check sometimes! I can get lost too. I know Leeds like the back of my hand, but sometimes it just goes and I don’t know the name of where I’m going. Have to keep calm when it happens, as stress makes it worse.
Do you have any coping strategies?
  • Marlene: I have a memory dog, she helps me a lot. I also leave things together. So a warm coat is always with the dog lead to help me remember it.
  • Bob: I leave notes for myself in doorways so I know I’ll look at them. I write them the night before and I write the date. Even though I won’t remember the date later on, I feel better if I know the date first thing in the morning.
What do you think to the idea of a light sensor for the oven Marlene? Or an app on your phone to track where you’ve come from Bob?
  • Marlene: Yes that sounds useful. Something to get my attention – I only have a small sticker on there at the moment and it’s easy to miss.
  • Bob: Yes that would be helpful to get back to a place, or for a regular trip.
How has your life changed since diagnosis?
  • Bob: When I was first diagnosed many years ago I thought that was it. But then I joined the dementia peer support network and it was the best thing I could have done. I’ve got good friendships with people I would never have met otherwise. I’ve started painting which I really enjoy. I lead a happy life.
  • Marlene: I don’t feel that different really, I’ve just carried on as normal. Stayed independent. I deliver dementia friends sessions, I go to talks and meetings. I go out with the dog. Just normal things. Because I’m still me.
 “We’ve really enjoyed today. Nice to think you might make a difference”

Peter and Nancy (DEEP members): It was wonderful to see the two generations working together to create new technology. But it was also wonderful to see the new understanding the students left with.

I saw the look of surprise on some students faces when they realised how active, independent and tech-savvy people with dementia can be. Of course, not all people with dementia do use technology, but some do. Avoiding any assumptions about dementia is vital.

“Thank you very much for your time”

Student: One of my favourite moments of the day was when a student group were leaving for lunch, and Bob reached out to shake a student’s hand. The student thanked him for his time. It was a lovely moment of connection and mutual respect.

I left even more aware of how dementia affects each person very differently. One person might have challenges with how they see things. Others may have challenges with navigating, or with language use.

Dementia can be very challenging. But it is a condition. It is part of a person, that’s all. People with dementia are still unique people. And all people, whether old, young, and living with dementia or not, have the ability to do remarkable things.

We are all really looking forward to seeing the technology the students come up with in the final competition next week.

 Useful Links

Language Use – A handy guide on what language to use when describing dementia

Environment Guide – Giving tips on how to make a building or space more accessible

Dementia Diaries – Hear people with dementia’s voices and opinions from across the UK

www.opforum.org.uk/dementiaOur website with more resources and support in becoming more dementia friendly in Leeds

Stay Well This Winter With Winter Friends

By Jenna Robinson, Graduate Local Government Officer, Older people and Long Term Conditions Team, Adults and Health Directorate

Winter is coming! That’s right, our Winter Friend’s campaign is back and we are armed with shiny new owl badges!

What is Winter Friends?

Winter Friends is a growing city wide network of organisations and professionals in Leeds who can join together to tackle the effects of cold weather on vulnerable older people as part of the national Stay Well This Winter campaign.  On the whole, Winter Friends carry on with their normal day to day work.

But as a Winter Friend they will make their contact with vulnerable residents count by  focusing on completing a simple Winter Wellbeing Checklist with support from a visual prompt card.

Winter Friends help vulnerable residents live independently by informing them about social activities and important services that will help them over winter.

What can I get from being a Winter Friend?

Joining Winter Friends means FREE ACCESS to information and promotional material from the Public Health Resource Centre.

FREE online training in promoting the high impact interventions or dependent on need a FREE 30 minute delivery of the Winter friends workshop which will talk you through the different partner organisations and what it means to part of a growing network.

The FREE promotional material including a winter wellbeing checklist, prompt cards and thermometer cards act as a reminder to people to get their flu vaccinations, take their medication, keep their homes warm and increase physical activity.

What issues  does Winter Friends Tackle?

Winter friends tackles CITY WIDE issues such as social isolation (we can refer people on to neighbourhood networks and social groups in their areas) and fuel poverty (our collaboration with the warmth for wellbeing service provides information and advice on how to heat your home affordably).

What Impact Does Winter Friends Have?

Becoming a winter friend could save someone’s life. For many, the winter blues might mean someone doesn’t go out as often during the week but for some, this could mean going months without any form of meaningful contact.

In targeting the Winter Friends campaign towards vulnerable people we are opening the avenues up for promoting advice and support which are available. This could be the first time in months which anyone has took an interest to ask about someone’s wellbeing.

What Do I Need To Do To Become A Winter Friend?

All it takes is registering your interest by emailing agefriendly@leeds.gov.uk and completing the free online training to gain access to a growing network of Winter Friends.

As soon as this is done, you can contact the public health resource centre in Chapel Allerton at phrc@leeds.gov.uk to receive your registration pack containing all the vital resources which is a must as a Winter Friend.

Find a local Winter Friend

If you know someone who may need a bit of extra help over the winter such as an older neighbour, family members or friend then contact the Helpline Leeds Directory 0113 3918333 or visit www.Leedsdirectory.gov to find your local Winter Friend.

We look forward to you joining us – Lets ALL Stay Well this Winter!!!

https://www.nhs.uk/staywell/#xHGSrVctmH3WVQ0Q.97

State Pension Age (SPA) threshold to rise to 68

By Peter Dale, chair of South East England Forum on Ageing (SEEFA)

We perhaps ought not to be surprised by proposals to increase the age at which people become eligible for state pension in the future.  Arguably it’s more of a surprise that it will have shifted so little by the time it is due to be implemented between 2037 and 2039, almost a century since the publication of the Beveridge Report in 1942.

In spite of recent reports that the increase in life expectancy is beginning to stall, there is surely no doubt that there have been vast improvements in the health and well-being of retired people since the immediate post war years and that today’s sixty something year olds bear little resemblance to their predecessors.

It might not seem unreasonable, therefore, that there should be a delay in being labelled as an ‘old age pensioner’.  Shouldn’t a more positive approach to ageing encompass the belief that people are ‘written off’ as old far too early?

There are of course questions to be asked.  The motivation for the proposal is likely to be the £74 billion saving that will accrue as a result of the early implementation of the increase.

The cost to the public purse of the state pension is never far away as an issue; always seen as a burden grudgingly to be borne, it provokes headlines about the ‘demographic time bomb’ and suggestions about the country not being able to afford supporting so many older people – forgetting of course that older people have contributed throughout their lives, and continue to do so, as taxpayers and consumers.

According to the Royal Voluntary Service’s Gold Age Pensioners report, 2011, older people make an annual net contribution of £40 billion to the UK economy (i.e., net of the costs of pension, welfare and health support) and by 2030 this is forecast to rise to an estimated £77 billion.

Rather than being concerned about the so called state pension ‘bill’, we should perhaps be drawing more attention to the fact that the UK state pension is one of the lowest in Europe.

An increase in the SPA will of course create a financial pressure for many people to carry on working and hence there will be significant implications for the labour market.

First, recruitment and retention practices will need to be fit for purpose to enable work opportunities to be available.  Secondly, employers will need to adopt new approaches that maximise the value of an older workforce; this could involve creating new roles that draw on experience and expertise.

There are questions about the increased risk of ill health or lack of capacity that may prevent people from working for longer.  There are also question about extending the length of time that people will have worked throughout their lives.  These questions of course can be posed whether the SPA is 68 or 65.

How does the risk that faced manual workers approaching 65 in past decades compare with the risk their counterparts will face in twenty tears time as they approach 68?

And will the pensioners of 2037 have worked any longer when they reach SPA than many of today’s pensioners who started work at age 16 or in some cases 14?

Whatever the SPA there should be a clear recognition within the benefits system of the needs of those people who are unable to work but just short of the qualifying age to claim their state pension.  As the NPC suggests, five years seems a reasonable period.

The main concern about the pension age announcement is the way in which it has been reported.  The media again have seized on the opportunity to create inter-generational tension.

The message has been that while current pensioners were able to retire at 65 (earlier for many women), today’s younger people are once again being ‘short changed’.

Moreover, it has been reported that while pensioners have seen an increase in their income, younger people have experienced a fall in income in real terms.  In general, the implication is that older people are very comfortably off at the expense of the younger generation.

The facts tell a different story.  Most pensioners are on low incomes in spite of the triple lock and other benefits.  Government figures for 2015/16 (Pensioner Income Series) show that their average weekly income is £296.

Although the state pension has more recently seen year on year increases, two and a half percent of a low figure is still a low figure, and it bears repetition that the UK state pension is one of the lowest in Europe.

It also bears repetition that older people are net contributors to the economy, not a drain on its resources.  Furthermore they have contributed all their lives through taxation and national insurance contributions to the public purse from which their benefits are paid.

The narrative that the burden is being carried by the younger generation who are now going to suffer as a result of the proposed SPA increase is highly misleading and divisive.

Age is an issue for us all.  It is to be hoped that older people in the future will benefit from changing social attitudes and a more positive view of ageing. The 68 year olds of 2037 may wonder what all the fuss was about.

Leeds Osteoporosis Support Group needs new Committee members…

By Val Kay

The Leeds Osteoporosis Support group is looking for new people to join the Committee (all volunteers) for the purpose of planning local meetings & events.

In particular we are in urgent need of a Secretary for the group who would take notes at Committee meetings (usually held quarterly) and contact speakers.

Full induction to the role would be given and support offered.

Leeds Osteoporosis Support Group is part of but independent from The National Osteoporosis Society. The Leeds group has an exciting programme of speakers for 2017.

Download the programme leaflet or poster for details.

When and Where

The group meets on the 1st Wednesday of the month (except January & August) 2 – 4pm at Oxford Place Centre, The Headrow, near Leeds Town Hall, LS1 3AU.  All welcome.

Contact details

If you are interested in any of the above or would like more information, please contact:

Angela Appleyard, Chairperson 0113 2752368

Jill Beaumont, National Osteoporosis Society Regional Manager for Northern England tel: 01423 779662 email: j.beaumont@nos.org.uk or

Val Kay, volunteer tel: 0113 2669666 email: val_virgo1@yahoo.co.uk

Help Needed: Can you spare 5 minutes to help Leeds University student design revolutionary new plant watering device?

University of Leeds student Annalise Hughes is developing the first watering can reminder system, which prompts the user to water their plants when the soil becomes too dry.

There are numerous apps and small indicators on the market to remind people to water their plants but these reminder alerts can easily be ignored.

The product is primarily designed to help people with dementia but is suitable for a much larger audience, reminding users to water their plants regularly, encouraging them to get outside and interact with their plants which research proves can be extremely therapeutic.

How it works

This product idea comes in 2 parts, a plant pot which monitors the moisture of the soil, a watering can and a stand for the watering can, which plugs into a household socket.

When the soil is getting too dry the user is reminded to water the plants, and both the pot and watering can will light up to show the user which pot needs watering.

Once the soil is less dry the lights turn off and the watering can, can be places back on its stand.

How you can help

Annalise would love to hear your thoughts and feedback about her design, complete her very short online survey at:

https://www.surveymonkey.co.uk/r/K8BB2K6

Or to receive an email version of the survey you can email her at mn13aoh@leeds.ac.uk.

Urban Impact Programme

By Gill Crawshaw, Development Worker, PSI Network & Volition

Forum Central is a participant in the Urban Impact Programme, a new collaboration between Sociology in Action at the University of Leeds, Leeds City Council’s Graduate Programme and third sector organisations.

Leanna Hills-Joyce is the sociology student carrying out research for Forum Central about using digital tools.

We would be grateful if you would fill in the survey and indicate whether you would be interested in taking part in a focus group. And please pass this on to other members of your team.

Research overview

As part of the Urban Impact Programme, working with Forum Central, this research aims to find out the digital capabilities amongst health and social care third sector workers in Leeds.

The digital world is expanding and this survey is trying to find out how confident workers are with using online facilities at work. This will enable them to support people they work with to make the most of digital and online tools.

The survey will be used to see how confident workers currently are in using online facilities, and from this what recommendations could be made to improve the current status.

We would appreciate if the survey was returned by Monday 13th March. We will also be holding focus groups so we would be very grateful if you could let us know if you are willing to take part.

Please take part using the link: https://www.surveymonkey.co.uk/r/KD9XMXK

Contact

For more information about this project, please contact:

Leanna Hills -Joyce at ss15lhj@leeds.ac.uk or

Gill at gill.crawshaw@forumcentral.org.u

Bramley Elderly Action to manage Bramley Community Centre

By Rob Cook, Communications Co-ordinator, Bramley Elderly Action

Leeds City Council has formally agreed the asset transfer of Bramley Community Centre to Bramley Elderly Action , who will manage the centre as a resource for the whole community to use. BEA hopes to make the move to the community centre in 2017.

The heart of Bramley

The centre, on Waterloo Lane (near Bramley Shopping Centre in the heart of Bramley) was facing an uncertain future. It is currently used by local older people for regular activities such as:

It also hosts a number of community groups, including Bramley Historical Society and Bramley Luncheon Club.

BEA is very keen that those groups continue to use the centre, and for others to do so too, as well as it being used for more one-off family and community events.

BEA will also move their staff to the building.  BEA will continue to run activities for the whole community from Bramley Lawn (which they took on as an asset transfer in 2014).

Easier access for local people

Together, the two centres will give much easier access for local older people to BEA staff and activities. BEA will continue to run activities and services for older people across the Bramley, Swinnow and Stanningley areas.

Overwhelming local support

Visitors to an open day BEA held at the Centre in October 2016 showed overwhelming support for the change, and the initiative also has the full support of the three Bramley & Stanningley Councillors: Caroline Gruen, Julie Heselwood and Kevin Ritchie.

The Council’s decision invites BEA to take on a 25 year lease with a peppercorn rent. The Council will carry out essential repair work identified in a recent condition survey before the lease begins.