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Installation of dementia-friendly car parking signs taking place in Worthing’s Buckingham Road Car Park.

The image above shows the culmination of a project by the Worthing Dementia Alliance to make it easier for carers and people living with dementia to park easily in central Worthing when they needed to access the town centre. We would like to express our thanks to Adur & Worthing Council’s Car Park team for being so brilliant about allocating the spaces and painting them. Also a huge thank you to The Sussex Sign Company who made and fitted the signage for us. 

Our thanks also to Fine Marketing and the Worthing Town Criers who designed the signs to be easily read.

Our next target for dementia-friendly bays is Adur!

At our June meeting, we welcomed Allison Cannon, Chief Nursing Officer, NHS Clinical Commissioning Groups for Sussex and East Surrey who delivered an excellent presentation.

She thanked us, Worthing’s Dementia Action Alliance, for achieving so much during our first five years and praised not just our work but achieving such a dynamic online presence with the website and social media and significant buy-in from local businesses and organisations across Worthing.

Initiatives such as the Pop-up Hubs, the Dementia Friends sessions, drop-in sessions, dementia friendly cinema and encouragement to GP surgeries and dentists, plus support for people affected by the disease had been well received.

Allison showed a pictorial overview of West Sussex’s Dementia Care Pathway and talked about steadily improving dementia diagnosis rates, post-diagnostic support and better access to dementia skills training.

With nine Dementia Action Alliances in the county, Worthing was by far the largest with 47 members (23 May 2019). There was increased coordination between health, the social sector and community services via multiple forums, including the DAAs, which was an essential aspect of building on a Dementia Friendly Community.

It was recognised there was much more to achieve from improving links between services as they were still very much siloed; providing information and advice in a timely and appropriate manner and recognising the value and support that unpaid carers gave. They were looking at up-skilling GPs; identifying that needs were social and not always mental and bridging the gap between health and social care with activities.

Primary care networks of GP Practices were between 30,000 to 100,000 patients and that it was important that GPs can signpost their patients to what is available in the local areas. Progress in Worthing had resulted in diagnosis rates improving to 65%.

Long term planning across the counties was seen to be essential as, at the current time, West Sussex is the only area with a Dementia Care Pathway.

Allison said that where we all need to work together to achieve more than we could see:

•    Further reducing waiting times for diagnosis

•    Address capacity issues within dementia services through partnership working

•    Early diagnosis and ongoing support for people with Learning Disabilities and minority groups

•    Enhance Dementia Friendly Communities to ensure sustainability

•    Enhance support for people with dementia and their families

•    Reduce stigma and improve engagement through a more joined-up approach to information and advice

•    Better access and choice around permanent and replacement residential/nursing care

•    The routine practice of advance care planning

The presentation opened up a discussion which included funding for Admiral Nurses; dementia-friendly wards across the whole of Worthing Hospital and the closing of dementia wards in the county and a move to Salvington Lodge with a public consultation commencing on 6 July 2019.

You can download a copy of the presentation as a pdf here.

This week we are focusing on the unpaid carers who are looking after a husband, wife, friend or family member with dementia.

Carers Week recognised the need of all carers who are supporting a loved one who is seriously ill, has a disability, a progressive illness such as dementia or is frail and elderly. Events are happening across the country to draw attention to the importance of caring and how much the country relies on unpaid carers.  Making sure they get the right information, support at work and access to wellbeing, while they are caring, is vitally important.

Our dementia hubs this week will help them remain connected to their community, find support in the community, not just for the person they are caring for, but also for themselves.

New figures released this week show that loneliness is seven times higher in unpaid carers than in the general public. They don’t have enough time or money to join in leisure activities, and a third are likely to feel their lives are not worthwhile despite their incredible contribution to society. Here is a link to Carers UK help and advice pages where you can also download information on Attendance Allowance and a raft of benefits.

Visit our Services and Support page to find local services and our Carers page for specific carers support.

Worthing’s phenomenal community – uniting people to challenge the stigma of dementia.

Worthing’s Dementia Action Alliance made sure than Dementia Action Day in the town would not be missed in 2019. The event was bigger and better than last year with stalls offering information, care advice, services and support; the loan of a vintage 1960s bus from Stagecoach; the Worthing Town Crier and Mayor of Worthing, Hazel Thorpe; a group of people with dementia, their carers and support workers plus pupils from St Andrews school on board to help. The unforgettable road trip to Ferring for lunch at the Abbeyfield Ferring Centre with entertainment and singing on a sunny spring day could not have been planned better. Passengers and their carers soaked up the nostalgia of days gone by and joined in with the peals of ‘Oh Yeah, Oh Yeah’.

Linda O’Sullivan, Head of London and the South for the Alzheimer’s Society summed it up as ‘phenomenal’ and went on to explain that ‘Dementia Action Week is about uniting people and communities to take action.

Promoting awareness of dementia and joining a social network can make a real difference in challenging the stigma that surrounds this condition. We know that people feel isolated but what we have here, is a real community making things work and, seeing young people here today is inspiring.’

Worthing’s Mayor, of only two days, Hazel Thorpe, described ‘the amount of work and effort that had been put in behind the scenes showed how hard people had worked. She said her mayoral year was to highlight, support and promote the people who don’t always get the recognition they deserve and said that everyone should be very proud of what they had achieved to bring this day together.’

The charity’s chairman and Town Crier, Bob Smytherman thanked Stagecoach and the driver Mark for a stunning ride on the green Leyland Titan through Worthing, Goring, Tarring and Ferring. Taking centre-stage on the bus everyone heard his bell before they saw the bus which drew attention to the dementia-friendly message on the sides of the bus. Thanks to pupils from St Andrews, a dementia-friendly school; all charities and organisations for supporting the event in the town; Abbeyfield Ferring and Home Instead for sponsoring the lunch.

Stalls in the town drew people who would not usually stop to talk about dementia and they discovered support from the care providers and charities within the town.

Worthing is busy all week with events and dementia hubs. If you want to learn more go to events, Twitter and Facebook.

The last 12 months has been an incredibly busy one for WDAA as it became apparent that we needed to establish the Alliance as a separate organisation in order to move forward and secure funding.

Dementia Alliances are committed to transforming the health and social care outcomes for people affected by dementia.  The Worthing Dementia Action Alliance is one of the local alliances, made up of people and organisations who have come together to create a dementia friendly town.

What do we do as an Alliance?

We promote best practice and enable it to benefit people living with dementia and their carers. 

We learn and divulge information on the latest trends and innovations from health and social care. We share this information through meetings, our website, social media and events.

And, we campaign with like-minded organisations to influence those issues which affect people with dementia. 

We are actually very proud of what we have achieved over 5 years, and it is all down to everyone’s dedication from the volunteers on the steering group to working with people and organisations like yourselves.

Over time, we had recognised the need for a paid co-ordinator role to ensure the Alliance grew and was sustainable. Last October, we held an inaugural AGM and adopted a formal constitution; voted a Chair for meetings, a Chair for the Steering Group and voted in a steering committee.

In our Constitution, we agreed the following: 

• to hold an AGM meeting within 15 months of the first meeting 
• that only signed up members of the Worthing Dementia Action Alliance could vote – one vote per organisation 
• that each steering group member had to be a member of the Alliance or, a carer or past carer with relevant experience of dementia.

The formal constitution provided the means to open a bank account and apply for a wider range of funding.

In November we heard that our application for a part-time co-ordinator had been turned down by two trusts but we decided to apply to the WSCC Members Big Society Fund by their December deadline with the proposed post being hosted by the Abbeyfield Ferring Society.

In early spring, we were informed the application was successful and went commenced a recruitment process to take on a part-time coordinator to support the running of the Alliance and drive our ideas forward. The post would commence at the beginning of June. We had 11 candidates, interviewed five and we were very pleased to find such an enthusiastic person with a wealth of experience in dementia.  

The Co-ordinator job description included the organisation of meetings, appointing speakers, Dementia Friends sessions, liaising with partnership organisations, persuading GP surgeries to take up the initiative and encouraging local organisations, such as schools, to be more involved with making Worthing more dementia friendly.

To support Lynsey’s role with equipment and to maintain our online presence and publicity for the Alliance we were also successful with some funding from the Sussex Community Foundation and welcomed the Worthing Lions support for paying our organisation’s insurance. Further sponsorship was obtained with what we felt was an appropriate promotion on the website by one of our founder member organisations.

The last 12 months have included talks on:

• LPAs and Capacity
• Haviland House and their progress towards Butterfly Home status
• West Sussex Dementia Framework – the review and survey
• The Carers Health Team
• Western Sussex NHS Hospital Trust on their Carers Passport; the Charter for Carers and the benefits – free car parking; night-time stays; meals for carers.
• Special Care Dentistry and preventative measures that dentists can recommend for those recently diagnosed with dementia.
• West Sussex Carers Support

The Library Service offered dementia friendly screenings in the lecture theatre and hosted Connie’s Colander, a play performed by the Human Story Theatre which explored the effect of dementia on a mother and daughter.

Engaging with other organisations and groups led us to discussions on the merits of dementia friendly football and promoting free short courses at the MET College for people undertaking dementia care (either employed or unemployed). 

Students from Sussex University filmed for short dementia documentary on caring for someone with dementia and we were grateful that three carers from the steering group found time to be filmed. The documentary can be found on our website.

The annual Carol Concert last December led by the Worthing Town Cryers was a very special event and you are all welcome to attend this year’s coming up on Friday 7^th.

Fine Marketing promoted Dementia Friendly Worthing at the Chamber’s Business Exhibition in February which led to new members and more dementia friends.  

May became a busy month for the volunteers on the steering group. We had planned well for Dementia Awareness week and were pleased to welcome a number of local parish churches – St Mary of the Angels and the St Vincent de Paul Society and St Marys Broadwater as new members and Dementia Friends.  We supported Southdown Leisure’s Live Well Worthing Day at the Worthing Leisure Centre. 

Our Dementia Action Day event on May 23^rd  combined awareness and inclusion. We were very grateful to Stagecoach for the use of an open-top vintage bus which was used for publicity in the town centre during the day. We were also very thankful to Worthing’s Town Cryer and his bell-ringing for ensuring no-one missed us as we drove twice to Ferring, through the streets of Worthing and back along the seafront. On both trips, we took people with dementia and their carers along with us for the ride and stopped for refreshments at Abbeyfield in Ferring where we spoke to more people about dementia.

In June, we welcomed Lynsey, who in her first 6 months in the role, focused on connecting with existing member organisations and businesses previously signed up to the Alliance. In addition to supporting them through their action plans, part of her work has been to encourage more people living with dementia and their carers to be able to speak out about the changes needed in their community.

Her work with member organisations has led to some exciting developments in the way of Pop-Up Hubs which have become a new way for the Alliance to meet with the community and to signpost PLWD and their carers to services they may not have accessed otherwise.

Worthing Library has hosted a Pop-Up Hub every month alongside one-off Pop-Ups at Worthing Leisure centre and Broadwater Medical Centre.

Working together with Worthing and Adur Council we have started the process of creating Dementia Friendly parking spaces in the town centre and 30 Worthing parking attendants have become Dementia Friends. 

We’ve also been working with the Worthing Town Cryers to make council run spaces more accessible. Dementia Friendly audits have been undertaken at Worthing Theatres, Portland House and the Town Hall. The Connaught Theatre audit has resulted in dementia-friendly cinema screenings and feedback has been overwhelmingly positive. 

Lynsey has also been working with GP surgeries to encourage them to become dementia friendly based on the successful plan at St Lawrence Surgery. Phoenix Medical group have become members and Broadwater Medical Centre have given the Alliance space during their flu clinics. Worthing Medical Group has joined the mailing list and hope to become more involved in the new year.

Our first dementia friendly dentist signed up to the Worthing Alliance which fitted in well with our guest speaker Dr Robert Emanuel who explained about specialist dentistry at our Open Meeting during Worthing’s Mental Health Week.

MET college has also worked hard to develop themselves as a dementia-friendly college and become an active member of our Alliance. This will develop and should see the Alliance work with the Brighton Alliance’s Coordinator to ensure consistency for staff and students across their sites.

Many local businesses are actively getting involved with becoming dementia friendly. Lots of premises have been visited and dementia friends sessions held at HMRC, Equiniti, Santander and the Co-op. 

There are estimated to be 2,000+ people living with dementia in Worthing and numbers are projected to rise to 3,000 by 2030. This is one in every twelve people over 65.  

Two-thirds of people with dementia live at home and there are estimated to be 6,000 family and friends caring for people with dementia in Worthing and working in our community.

At our October Open Meeting, we welcomed Dr Robert Emmanuel, a Consultant in Special Care Dentistry with the Sussex Community Foundation Trust who explained the work his team had been undertaking in preventative dentistry for people living with dementia.

We thank Reuters for granting permission to use part of their research article by journalist Carolyn Crist.

Preventive dental care provided in the early stages of dementia could help limit major tooth problems later, researchers say.

“Dementia is associated with a change in health habits, including two major ones – diet and teeth cleaning,” said Robert Emanuel of Sussex Community NHS Foundation Trust in Sussex in the UK, a speciality care dentist who is often consulted to help patients with late-stage dementia.

Sometimes their teeth are nearly untreatable, he said.

“Especially when patients go to residential care, they tend to have a more sugary diet and have problems cleaning their teeth,” he told Reuters Health by phone. “If not looked after, their teeth can deteriorate quite quickly.”

Emanuel and colleague Anne Sorensen of Brighton and Sussex Medical School surveyed 51 patients about 10 weeks after these individuals had received a dementia diagnosis. They asked whether patients were registered with a dentist and if they received preventive dental care.

Forty-one patients, or 80 per cent, were registered or seen regularly by a dentist, and 35 said they had been to the dentist in the past year. About half of the patients attended regular hygienist sessions.

At the same time, however, preventive care appeared to be lacking. Most patients didn’t receive diet advice or oral hygiene instructions. Most also weren’t offered fluoride treatments, particularly fluoride varnishes, which can help prevent cavities and tooth decay.

“With dementia patients, we tend to be treatment-oriented and there’s not as much talk of prevention,” Emanuel said. “Early in the disease, we should build positive habits so patients don’t forget what their dentists advise.”

The full article can be read here: 

It was a very enlightening presentation and lots of interesting facts came out of the ensuing discussions with the most important being the use of Duraphat, a high strength fluoride toothpaste which can be prescribed by your dentist but is not available to purchase over the counter.

Here are a few tips which can be encouraged at home.

•        Brush twice daily with fluoridated toothpaste. Once, last thing at night and again, during the day.

•        Spit out after brushing and do not rinse.

•        Use a fluoridated toothpaste. Ask your dentist if he thinks a high strength fluoride toothpaste would benefit you which he can prescribe you (e.g. Duraphat)

•        Limit food and drink containing sugar to mealtimes only if possible.

•        Sugars should not be consumed more than four times per day.

Dental treatment or advice you may benefit from – Discuss with your regular dentist

•        Apply fluoride varnish to teeth twice yearly.

•        Consider prescribing high strength fluoride toothpaste and/or a daily fluoride mouth rinse.

•        Consider using a diet diary over 3 days, to check for possibly harmful dietary patterns.

Preventing Gum Disease

Patient – This is what you need to do at home

•        If your gums are red or bleed it is a sign of gum disease.

•        Brush teeth and gum line systematically twice daily.

•        Use either a manual brush or powered toothbrush with a small head and a medium texture.

•        Clean daily in-between the teeth with dental floss, tape or small interdental brushes before brushing.

•        A diet for good general health will benefit your gum health including lots of fruit and vegetables.

•        Do not smoke.

Dental treatment or advice you may benefit from. – Discuss with your regular dentist.

•        Advise best methods to remove plaque.

•        Eliminate factors that prevent effective oral hygiene including calculus and faulty fillings.

Dental Check-ups

Time intervals between check-ups should be patient specific and take into account the increased risk of tooth decay and gum disease.

Patients with early dementia should be considered as being at risk from dental disease so more frequent intervals should be considered.

Dental check-ups are an important opportunity for prevention advice.

Oxford based Human Story Theatre will perform its critically-acclaimed play Connie’s Colander at Chichester Library, a charming two-hander play intertwining a mother and daughter’s journey with dementia, followed by a Q&A session.

Connie is a retired domestic science teacher. Emily, her daughter, is enjoying hosting her first TV cookery show: Connie’s Colander, bringing her mother’s recipes onscreen and up to date. Sensitively, with humour and tenderness this newly written play traces the evolving relationship throughout their lives, and the impact of Connie’s Alzheimer’s. Can their relationship, and the TV show, survive?

An informal atmosphere is created for the Q&A, facilitated by the two actors, with local dementia specialists able to signpost people to their local services. Building on the story within the play, the audience is also encouraged to share their own experiences, both to ‘offload’ and also to help support fellow audience members, if appropriate.

For further information and queries please contact Jackie Manners, Principal Librarian Wellbeing, West Sussex Library Service at Jackie.manners@westsussex.gov.uk

This is a free event. However, we will operate a ‘pay what you can’ policy so if you would like to make a donation to the Human Story Theatre there will be the opportunity to do so after the event.

The play will be held on the ground floor which has sloped access.

Suitable for 12+

Volunteers from the Worthing Dementia Action Alliance were busy in May running Dementia Friends information sessions for a number of prominent groups in Worthing. 

St Mary of the Angels Catholic Church and the Vincent de Paul Society joined for two sessions at the church and the Worthing Lions, who are part of the worldwide family of Lions Clubs International, organised a further two sessions for their members and friends who wanted to be part of making Worthing dementia friendly.

The sessions were open and friendly, full of information and interest. It’s good to know that we have such a super community who are willing to give their time to encourage people to become more dementia friendly and make it easier for carers and people living with dementia to remain independent and part of the local community. 

Charities and local organisations who are part of the Worthing Dementia Action Alliance, joined forces to make Tuesday 22 May, 2018 a special day of action to build awareness of becoming more dementia friendly to help people live well with dementia. 

On loan from Stagecoach buses was a delightful vintage bus from the late 1960s which was bedecked with banners promoting the cause. On board, we invited carers and people living with dementia from local Alzheimers and Guild Care services.

The bus took the route through Worthing, Goring and on to Ferring with the town’s infamous Town Cryer ringing out the news from the open-topped green and cream bus. There was no getting away from the sound of the bell, or of Bob, for that matter, and…. if you were on top of the bus, it was even louder! However, a great time was had by all and both journeys stopped at Abbeyfield Ferring’s new centre for tea and cakes. 

We returned to the town for late morning and spend a couple of hours handing out leaflets and encouraging people to visit the website and see what it was all about. It was a really good working party with people from Carers Support, the NHS Partnership Trust, Memory Assessment Unit, Alzheimers Society, the local Methodist and Catholic Churches, Mind Coastal, Dementia Friends and many others. 

Special thanks go to Stagecoach Buses and their volunteer driver Chris without whom the day wouldn’t have been so enjoyable and to Bob Smytherman who always amazes with incredibly powerful voice and loud bell which just stops everyone in their tracks!

Worthing Electrical company, SJM Electrical, were approached at Better Biz Worthing in February, about becoming a dementia-friendly company.

Proprietors, Steve and Jacki Mant, thought this was an excellent idea as this would increase their employees knowledge of the disease and make it easier to undertake electrical work within households where a person was living with dementia. Their admin staff also joined in the initiative which helped them understand the role of carers and how difficult it was to ensure they would be visited at a set time as their lives revolved around the person they cared for.

The company have become members of the Alliance and have pledged to make a difference to anyone they know who has dementia with the understanding they have gained from a Dementia Friends session. 

Julia Johnson, a member of Worthing’s Dementia Action Steering group said ‘It was a pleasure to deliver a Dementia Friends information to such a keen and receptive group of people. I know they learned quite a bit in a short time and feel sure that when they visit the home of someone with dementia they will have more confidence to respond in a relaxed and friendly manner. Companies can gain a considerable amount from becoming Dementia Friends as managers and owners quite frequently find they have carers in their own workforce who need flexibility to accompany their family members on visits to the doctors, hospitals and dentists for example.’