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.

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