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Don't mourn, but organise!

It’s claimed that the British trade union movement, in response to yet another battering of the left-of-centre political parties at the general election in 2015, produced the clarion call, ‘Don’t mourn, but organise!’ The saying, originally associated with the last words of a singer and activist called Joe Hill it is reported, has become synonymous with a severe defeat.

The diagnosis of dementia, imparted to a person and his or her friends and family, can be perceived as a severe defeat. With a relative lack of pure biomedical offerings for symptomatic treatment or cure, currently, or indeed drugs to halt progression of the disease, persons on receiving a diagnosis can be expected to commence an endure a prolonged period of a type of ‘mourning’. The expectation of packing up your day job or dissolution of friends of family can be overwhelming, if an alternative of reablement through the social model of disability is not even ‘on offer’. It is estimated that there are currently about 47 million people in the world living with dementia.

I often give ‘Dementia Friends‘ sessions to the general public. Such information sessions can lead you to bring into sharp focus your own thinking indeed. I was asked about the ‘diagnosis gap’ recently by a salaried GP from West London: this is the gap between potential diagnoses of dementia in the community, and the actual number of diagnoses given. This shortfall has had a number of reasons associated with it across the years, and English policy has tried to reduce this gap.

Chris Roberts was told his diagnosis of mixed dementia, Alzheimer’s disease and vascular dementia, a few years ago. His dementia is what is called a ‘young onset dementia’, as it presented before the age of 65. However, Chris had a history of emphysema, a disease of the lung which can produce shortness of breath and marked decrease in oxygen saturations. Such low oxygen (hypoxia) can indeed cause memory problems. Chris underwent a series of systematic tests before finally arriving at a diagnosis. That is why you always hear Chris about preparing to wait for a proper and correct diagnosis in a ‘worth the wait’ manner.


Chris is passionate about educating others about dementia. He is in fact the Alzheimer’s Society regional ambassador for Wales, a contact for the Alzheimer’s Research UK, a ‘champion’ for Join Dementia Research, a delegate for Dementia Action Alliance, passionate about supporting Young Dementia UK, a Dementia Friends champion, amongst his main commitments. Such experience has been very recently recognised in his deserved appointment to the committee appointed by NICE (the National Institute for Clinical Excellence).

The basis for the doctor-patient relationship is based on trust and confidence. And yet the statistics surrounding how a diagnosis sometimes not being imparted are staggering. The whole ‘mix’ of reasons is complicated, including a reluctance by some not wanting to be given the diagnosis of dementia, but 37% of people with dementia in the UK do not receive a formal diagnosis, and the length of time you have to wait to receive a diagnosis varies hugely depending on where you live, from two weeks to over six months. For some time now, the Alzheimer’s Society has been doing its ‘Right to Know’ campaign.

In English policy, there have been correct concerns that accompanying the drive for diagnosis should be an equal sustained improvement in post-diagnostic care and support for a person with dementia. This might include a care coordinator, information sharing between care services, multi-disciplinary input as or when required (e.g. from a physiotherapist, speech or language therapist, occupational therapist, clinical psychologist, specialist nurse), enhanced healthcare across a diverse range of care settings (including at home, residential care homes, hospitals and hospices), better advanced care records and planning, better end of life care, and so on. Clinical nursing specialists have in particular a pivotal role in helping with coping strategies for carers, who very often find themselves under strain whilst doing valuable and rewarding work. And an optimal system must include dementia advisors and dementia support workers too.

Chris himself spoke briefly about this topic last year at the Alzheimer’s BRACE conference in Bristol.

Chris produced a brief ‘wish list’, which started with ‘joined up services’.

Here in a recent Care England/ITN debate, Beth Britton, well known campaigner and advocate in dementia care, says, “In my own experience, for my dad, integration simply did not exist.”


The cuts in social care funding over the last few years have been devastating. Such cuts have had an impact on the delivery of NHS care, for example in delayed discharges from hospital, but it is clear that the social care profession need proper resources and time to care in itself.

The Alzheimer’s Society is currently looking at standards in post diagnostic care and support for dementia, and this will be an extremely welcome contribution to the narrative here in England. A substantial contribution has been made previously by the Care Quality Commission in their ‘Cracks in the pathway’ document, which, while celebrating outstanding care, did concede simultaneously that bad care did exist and could not be accepted. Often care faltered at discontinuities in the care system, notably.

Life experiences matter enormously, as through building up a picture of how people have lived beyond their diagnoses of dementia in the community is critical for us all to understand dementia. Wendy Mitchell never fails to amaze me in the sheer commitment she puts into her campaigning, which includes describing her experience of early onset Alzheimer’s disease, including through her blog ‘Which me am I today?‘. Alzheimer’s disease is the most common type of dementia worldwide, typically presenting with significant problems in learning, memory, navigation and/or attention. Wendy is passionate about promoting dementia research particularly. Wendy will indeed be discussing with Gavin Terry in policy from the Alzheimer’s Society the need for an effective post-diagnostic network next week in ‘NHS Expo’.

In the UK, there are some remarkable individuals who stand out also as leaders, living with dementia. I can think of immediately Hilary Doxford, who happens to be the delegate living with dementia for the World Dementia Council. Also, Ken Howard is an Alzheimer’s Society ambassador, and Dr Jennifer Bute (and who recently featured in BBC Radio 4’s “A doctor’s dementia“. I am also mindful of Agnes Houston MBE, living with dementia from Coatbridge, Scotland. Valerie Blumenthal also has been outstanding in sharing her experiences of what it’s like to live with a relatively rare type of dementia; and has just finished what I am sure is another excellent book. And these are just a few names from the UK; there are many more in Europe, and indeed next week’s Alzheimer Europe conference in Ljubljana, Slovenia, will allow time for many social and professional gatherings.

There is no doubt that huge strides have been made in ‘engagement’ and ’empowerment’ of people with dementia. I do not wish to underestimate this. But I do find the word ‘engagement’ as a term a bit limp; for example, I do not as such ‘engage’ as postman when I receive my post from and chat with him daily. You can’t “half believe” in equality or inclusivity, I feel. It has to be more than perceiving people living with dementia as ‘living with an illness’ in the strict medical model, and getting away from the ‘does he take sugar?’ mentality which can inadvertently rear its ugly head. I feel the next obvious advancement is to advance empowerment to a further level, and to have those people who want to, living with dementia, also leading on policy. Chris’ appointment to NICE and Hilary’s appointment to the World Dementia Council, while conceding that a few representatives for the millions with dementia are inadequate, have been the necessary first step in this process, I feel.

There are ways of not mourning but organising, through for example the European Persons with Dementia (chaired by Helga Rohra), or internationally through the Dementia Alliance International (chaired by Kate Swaffer). Therefore, if one truly believes in genuine equality, we should be jumping at the chance of equipping those people with dementia who want to with the leadership skills to promote authentic advocacy. This will meet with some resistance from others, I am sure, but this is essential if we are to go beyond ‘friendliness’ and cut into the icebergs that are stigma and discrimination.




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