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JDC Asks...

Mon 02 Mar 2020

Having met Kate Lee as a chairman of one of her interview panels, I am confident she has the skills, personality and experience to take on the leadership of the Alzheimer’s Society. Jeremy Hughes has done a very good job over the past 10 years. But, although my dementia now causes me some stress with regards to handling change, I respect his view that the time is right to hand over the reins.  Since having the honour and opportunity of being a part of the movement to genuinely involve people with the current lived experience of dementia, I have witnessed some successes and some frustrations which I guess are common to many service providers and users. I want Kate to take the work that Jeremy has spoken about much further, and at the heart of this must be that all initiatives and campaigns have at their centre and at all levels people affected by dementia, i.e. those with a diagnosis and our loved ones. Care needs to have a greater emphasis both in provision of services and investment in research.  Positive change only happens with leaders on board, and Alzheimer’s Society’s Dementia Voice training workshop needs leaders also to attend. The best thing about the Society Kate inherits is its staff, who are totally committed to making a positive difference NOW. The Society needs to work harder to retain its best staff because too many good people have been lost to the cause over the years.

Keith Oliver is an Alzheimer’s Society Ambassador and member of the 3 Nations Dementia Working Group Steering Group.

 

I am regularly in discussions with carers of people living with dementia. Almost universally, their major concern is that post-diagnosis, they feel they have virtually no appropriate support by either the statutory or the voluntary sector. This is, in my view, the most important challenge facing the Alzheimer’s Society. The Society was founded by carers for carers at a time when there was low awareness of the condition and even greater reluctance than now for people living with dementia and their carers to admit to a problem and go the doctor for an assessment. Over the last 20 years, though, people have been receiving a diagnosis earlier. The Society has been putting increasing emphasis on giving people, especially younger, articulate people with dementia, a platform to express their views. But carers also have so much to tell us. They need to know how to manage, where to get information, and, above all, where to find support. So. Kate, top of my to do list is please take time to listen to people with dementia and their carers. Please ensure the Society button is automatically pressed by the family once the diagnosis has been given. The Society, either on its own or in collaboration with other voluntary organisations such as Age UK, can then provide information, signpost local help, encourage joining support groups and training sessions. I should like to see Alzheimer’s Society information and advice outlets in every high street in the country. All people with dementia and their carers should know the name of their clinical lead person, as recommended in the most recent NICE guidelines, and be linked with the Society.

Nori Graham is vice-president of Alzheimer’s Society and of Alzheimer’s Disease International

 

Welcome, Kate, to this crucially important role in developing meaningful support for people living with and affected by dementia. What are the big things we need you to do? First, with your strong campaigning team, hammer on the doors of government to get us fairness. Not to be heard, but to get action. Government have heard us for years but have not acted. So hammer and shout; persuade the government to end the postcode lottery of care. Second, ensure that if Dementia Connect is to become the standard support service across the country (as referred to in the NHS long-term plan), ensure that advisers are all fully trained up to do their work well. Third, change the culture of Alzheimer’s Society, which at the moment comes across as “our way or no way”. Allow local people to run groups as they want to, not as you think they should, nor as a national standard model. Alzheimer’s Society’s role should be as facilitator of local support groups, not controller. Fourth, sort out the National Dementia Action Alliance, and the Dementia Friendly Hospital Charter. Chronically underfunded and understaffed, these need proper resourcing. Fifth, and I shouldn’t need to say this...value your people. There’s been too much reorganisation, slimming down, expecting too much of staff. This is neither good for them nor for us, the people they should be helping. Sixth, and possibly the most important and potentially productive, please work with other organisations, not against them. As you of course know, Together Everyone Achieves More. And good luck!

George Rook is a Dementia Diarist and lives in north Shropshire

 

Congratulations to Kate Lee who is soon to take over as CEO at the Alzheimer’s Society. There can be little doubt that the charity has made huge strides under the leadership of Jeremy Hughes. During his tenure in the top job, dementia has moved from the margins to mainstream with greater public awareness and understanding of the condition, perhaps best illustrated by the success of the Dementia Friends initiative. However, it is equally clear that there remains much to do. Striking the right balance between campaigning and service provision, as well as between promoting research and ensuring appropriate support is available, is vital. People are likely to be living longer with dementia. This reinforces the importance of protecting their quality of life. It cannot be right that NHS continuing health care funding is so difficult for people with dementia (and their families) to secure – inconsistencies in assessment and funding decisions have become commonplace. Evidence that the care and health system is creaking at the seams can be witnessed every day in media horror stories. Adult social care urgently needs reform: from carers unsupported, care home services stretched to the limit, challenges of recruitment and retention of workers, and funding, among other things. And yet social care continues to be the political football forever being kicked into the long grass. The long promised Green Paper on reforms to the care and support system and how it is funded is a paramount priority I’d like to see at the top of the “to-do” list. 

Des Kelly is chair of the Centre for Policy on Ageing 

 

“Congratulations on the new job” is a sentiment that follows the new broom and probably lasts as long as the flowers in their new, probably impromptu, vase. There will be lots of other cheery comments, on Jeremy Hughes being a hard act to follow, on what a great time to help sort out social care, and how lovely to have interesting complexities to grasp, such as the new liberty protection safeguards and their details. Good luck is probably much needed! Does anyone take advice after they have accepted the new job? Probably not. But maybe it is an opportunity for us all to think about the value of hindsight. Are there any common threads in what people wish they had done or left well alone? So, dear Kate, my thruppence worth goes along the following lines. Maybe beware setting priorities too soon. It may not be easy to back pedal. Go travel – up, down and across the UK - taking into account the Society’s remit but seeing very different scenes of dementia care, and to places that are doing well and not so well. They will probably have much in common. Ask to see the “usual” as well as the things that people say are innovative. And be prepared to be impressed, moved to tears, laugh a lot, and overdose on tea. How about doing some mystery shopping? Of the Society’s website and of others’ websites, of information and advice from different quarters, and of the Society’s services if possible. And if anyone offers you advice on how to expand the hours in the day – I would take it. Good luck to you. 

Jill Manthorpe is director of the NIHR Health and Social Care Workforce Research Unit at King’s College London.

 

 

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