Alzheimer’s Awareness Week

Argus title : Struggle to keep a vital service going

In June last year I wrote a tribute to Neil McArthur, the late Manager of the Brighton Area Branch of the Alzheimer’s Society, who had died on 19th May.

Amongst other things I wrote that Neil “..was particularly concerned about the needs of people with early onset dementia and their carers, realising the urgent need for good advice and support at an early stage.” I mentioned that in 1999 Neil helped set up the Towner Club, a day service for younger people with dementia, the first of its kind in the southern area.

A year on, I met with Alan Wright, Neil’s successor, to talk about how the work of the branch is progressing. He has been in post for just 7 months. Appropriately, we met at the Towner Club.

Like Neil, Alan is quietly spoken and unassuming, but very dedicated. He too is passionate about the needs of people with early-onset dementia, recognising that early diagnosis is essential if proper services are to be put in place.

He said: “A huge part of this job is about administration and fundraising, but the highlight of my working week is contact with service users. I love coming to the Towner Club, spending time with members and engaging with them.

The Towner Club meets on Tuesdays at 62 St James Street, in the heart of Kemptown. Its members, all aged between 35 and 65, have been diagnosed with one of the many forms of dementia, including Alzheimer’s. Specialist support is provided by qualified staff, including a mental health nurse and an occupational therapist, along with support workers and volunteers from the Alzheimer’s Society. The Club is a member-led service and offers a range of individual and group activities that allow members to develop new skills and to retain existing ones.

Alan said: “The Club is an essential resource for people living with early onset dementia but, despite being recognised as a model of excellent practice, it is a constant financial struggle to keep the Club running since statutory funding for such initiatives is extremely limited.”

Receiving a diagnosis of dementia can be shattering for the individual concerned and for family members. This is especially true when onset is early. The person with dementia may be a major breadwinner and still have children to support. Typically, they will not have been coping with their job and may be in deep financial difficulty, especially if they have been running their own business.

All too often people make contact with the Society very late, and frequently not until they are in crisis. The Society is keen to make contact at an early stage in order to provide support and advice before there are major difficulties. It is all too aware that numbers diagnosed with dementia are set to massively increase over the next decade.
Alan explained how the other work of the Society is developing : “Until now, the Brighton & Hove branch of the Alzheimer’s Society has depended heavily on people accessing the carer support service via word of mouth, local advertising and a single drop-in facility in Hove. However, we recognise that in order to reach many more of those people affected by dementia, the Society must develop a wider presence across the whole city. So we’re aiming to strengthen links with health professionals and engage in increased outreach work.”

The Alzheimer’s Society has to leave its Hove premises this month and has used this opportunity to restructure and improve access to the Information & Support Service. In addition to regular drop-ins at a number of different locations around the city, it has also set up a popular Thursday morning “Friendship Café” at a city centre venue.

New Information and Support Sessions have also been set up alongside clinics in the Nevill, Brighton General and Aldrington Day Hospitals. Alan said “The opportunity to engage with individuals immediately after a diagnosis of dementia will significantly improve uptake of support services.”

The Society is committed to support both individuals with dementia and their carers. There is currently a well-established Relief Care Scheme which works with 80 families. This provides respite for carers, allowing them to rest or go shopping or even to have a leisurely bath – knowing that the person they care for is safe. The scheme is no mere “sitting service”. The trained relief carers work with each individual to offer personalised and appropriately stimulating activities, such as memory work, reading, art work or baking.

There is an existing Carer Support caseload of approximately 65 people – currently delivered by 2 staff members. However, the new community ventures and improved access to the Society’s services are expected to cause significant growth in caseloads. during the next twelve months.

As a consequence, the Society is soon to appoint an additional Support Worker. A key part of this worker’s role will be to increase the number of early interventions, working with a much wider cross section of the Brighton & Hove community, including Black and minority ethnic groups. The post is funded for one year only, but the branch will be fundraising to continue the post.

I put it to Alan that dementia services have historically been viewed as “Cinderella services”. He pointed out that services for early-onset dementia are particularly poorly funded and warned that the future of day centre provision is currently under review at a local and national level.

He said “The Towner Club’s innovative work has received many accolades, but it has insufficient statutory funding. It’s wrong that we should have to fundraise for core elements of a service, such as salaries and rents.” He warned that a strategy of maintaining people in their homes can only work if they have day services available to them.
Alan added “We’d also like to expand the Towner Club. We are also very conscious that there are no dedicated services at all for younger people for whom the disease has progressed. Often all that is available to them is to be placed in residential and day services for elderly people, for which they are not suited and often find frustrating and undignified. Their carers are in a terrible situation because specialist support services are unavailable just at a time when management of the disease is becoming more difficult.”

The Alzheimer’s Society’s annual Dementia Awareness Week takes place from 6th – 13th July. The focus here in Brighton and Hove will be on raising awareness and fundraising for the Towner Club.

Alan Wright said: “The point is to raise public awareness, particularly of early onset dementia and how this affects people’s lives. Diagnosis can be devastating and people can believe there is no hope. “

He added “Our objective as a Society is to help people to live with dementia. We want people to know that there is a lot of life left to enjoy – but people need support to be able to do this.”

Contact the Alzheimer’s Society on 01273 726266.

Salt of the Earth

Argus title : Seasoned pair live to serve

Writing this column is always a privilege, sometimes good fun and on occasion an opportunity for pure self-indulgence. One of the best aspects of it is that it gives me the chance occasionally to write about people whose stories are not usually found in newspapers.

A letter to the Times newspaper recently set out the rather snobbish definition of a “lady” as one whose name is printed in the newspaper just three times in her life, at birth, marriage and death. This elitist definition of a woman of the upper classes, blithely ignores the fact that most people in this country never make it to the newspapers at all.

June and George Austen are no exception. June turned 65 last Saturday, but there was no bidding war between Hello and OK as to which magazine should photograph her party. June spent her special night out watching Sleeping Beauty on Ice at the Theatre Royal with her family. After that, it was fish and chips at Bardsley’s and a walk along the seafront.

June tells me she did make it into the Argus once when, at the age of 13, she won a prize in a “window-spotting” competition. Apart from that, she and George have lived their lives well away from publicity.

I first caught sight of them two years ago when I started attending St Peter’s Church. I learned that they had been servers there for years, assisting a succession of priests during services. I later discovered that George had served for over 50 years and June for almost 40.

These were the days before the nave was closed off, so I was able to sit right at the back. I’d watch them in the distance, robed in white cassocks tending the altar, carrying the great brass cross or candles when the Gospel was read, laying out the order of service for the priest.

At that time I was in awe of them, thinking they knew all there was to know about the church. Later I came to learn they were two of the most unassuming people anyone could wish to meet.

I enjoyed watching them, working together quietly at the altar, anticipating each other’s every move. Later, I’d see them walking out together, looking remarkably youthful and often spectacularly dressed – with June in short skirts and both in bright colours. I noticed they tended to move in unison. It was only much later I learned that they are keen ballroom dancers.

I still smile to see them, laughing and gently squabbling – obviously delighting in each other’s company. At times they seem almost magical. More than once I have sat in church imagining them as the artist Marc Chagall might have painted them, taking off and flying round the interior of St Peter’s Church in their white cassocks, heading off up into the rafters and then swooping past the stain glass windows for the pure mischief and joy of it.

George’s parents were Londoners. When the war came, they moved to Brighton where in 1941 he was born. He can remember the guns being fired from the seafront – and D Day, when military vehicles packed the area outside the family’s flat in Sillwood Place. His father was an air raid warden.

He was very close to his mother whom he remembers as immensely kind and a member of Max Miller’s wife’s knitting circle. It is the stuff of family legend that the famous “cheeky chappie” spoke to him when he was a babe in his pram.

George’s father had no religious faith, losing it after the devastating flu epidemic which followed the First World war and resulted in millions of deaths worldwide. George’s mother however was deeply religious and introduced George to St Peter’s Church, where aged 14 he became a server. While she served in various guilds and the mother’s Union, he played badminton and made friends in the church’s youth club.

George’s grandmother died of cancer when his father was only 18. He later told George that his father would not pay for a taxi to take his mother to hospital and so she travelled by bus. George expressed no bitterness towards his grandfather. However, his neglect of his grandmother may be one reason why George decided that whoever his wife might be, he wanted to “spoil” her and “give her things”. June recalls that in the early days George would give her small presents every week – usually a carefully chosen bangle or another piece of jewellery.

Like so many Brighton couples, George and June met at the old Regent Ballroom, which used to stand at the top of North Street on the site now occupied by Boots. June was 18 and George was 20 when they were introduced by George’s friend Freddie. “She looked lovely” George told me “A real cracker”. They went out for 11 days running. George mused “She wouldn’t let me kiss her that first night”. They married at St Peter’s Church 3 years later and have two children and 4 grandchildren.

George carried on as a server at St Peter’s and June joined him in 1970 when women were finally permitted to serve. They have been actively involved in the campaign to save St Peter’s Church from redundancy. As June says “They are taking all our happy life. They’ve taken the Regent Ballroom where we met, the West Pier where we used to walk and now they’re trying to take our beloved church.” She adds “We built our lives around that church. So many people have.”

June was born in Brighton and lived in Goldstone Villas in Hove. She had a very difficult childhood, not least because her mother was often in poor health and needed her to stay at home. As a result June’s education was disrupted. She loved drawing and was very good at it, but there were no opportunities to develop her skills. Like George – and so many others of her generation – she went to work at an early age.

Most of June’s employment has been as a shop assistant, often selling shoes. She has worked for the same company since 1972, and is now based at Debenham’s in Churchill Square, selling ladies fashions. A few years ago, she began piano lessons, which she loves.

Supervisor Cathy Panther described June as “very good with the public, kind and patient”. Her colleague Jackie Stocken said “June’s a lovely person, always very positive and happy. She has one of the kindest hearts. If she has problems she comes up smiling. There’s such a close affinity between her and her husband I think it helps.”

Certainly, their married life wasn’t always easy. George did factory work and was twice made redundant. Eventually, in 1991, he began work for the Brighton& Hove’s City College, first as a caretaker and then as the “post man”. It is a job he loves, because it allows him to meet people.

Phil Frier, the Principal of City College, describes George as “a key member of the City College community.” He comments on his “cheerful smile” and adds “He knows everybody and is a brilliant example to us of someone who is always positive about life. He always has a different story to tell us every day!”

George refuses to let things get him down. Even a diagnosis of prostate cancer was not enough to defeat him. City College’s Facilities Operations Manager Tony Toynbee commented:

” George has soldiered on through a recent bout of illness and other difficulties such as the closure of the College’s local Post Office and still managed to remain a very positive and focussed person.” He added “He can also be fastidious and has been known to reject five post trolleys before he found the one best suited to his deliveries – he made the right choice though as it has served him well ever since.”

The choices they make are important to George and June. Jackie Stocken said of June “Once she makes up her mind to something she gives it 100%.”. She could just as easily have said this about George. Every day of their lives, George and June renew their commitment to each other, their work, their church and their community. And they do it without fuss, pretension or pride.

The “salt of the earth” is how Jesus referred to his followers, none of whom had much power or wealth. It is an overworked phrase, but one that suits this loyal and faithful couple.

They are two of the best.