A new book by a well-known doctor is clearing the fog surrounding living with dementia

A new book by a well-known doctor is challenging long-held preconceptions regarding the care of dementia patients. It sets out to challenge care and support surrounding a whole host of areas. These include mental health, spirituality, sexuality and “dying well”. And the author’s own personal story is worthy of a book, too. As it’s one of overcoming adversity and illness.

Lived experience

Dr Shibley Rahman’s latest book is Enhancing Health and Wellbeing in Dementia. It is the final book in what he refers to as a ‘trilogy’ on dementia symptoms and care. The book presents in-depth, evidence-based analysis and opinion with a simple goal. Directing the reader to a conclusion about how to achieve quality integrated care. Whether in residential or home-based settings. And speaking to The Canary, Rahman said that his passion for dementia comes from lived experience:

In 2007 I became disabled due to meningitis after a six-week coma. From that point onward, I have lived in recovery; previously I was an ‘active’ alcoholic. My books are all about wellbeing and dementia. This reflects very much my changed attitudes and perceptions following my coma. I am more interested in the social model of disability in living with a long term condition such as dementia, rather than the biomedical approach that drugs can cure all.

Surprisingly accessible

The book breaks down into 13 sections. Each section uses a combination of academic references, guidelines from the National Institute for Health and Care Excellence (NICE), guidelines from the NHS, and Rahman’s own experiences and opinion. At the beginning of each chapter, Rahman explains what he hopes readers will draw from the section. At first glance the book appears to be for medical professionals, but this is not entirely the case. Rahman has constructed it in such a way that it is accessible for anyone with an interest in dementia symptoms. But he says this wasn’t intentional:

No, it wasn’t! I write as I blog, and my life’s experiences have firmly put me on the side of the person with dementia and carer rather than professionals. I think this accidentally becomes obvious from the subtle messages in the text.

An act of medical vandalism?

While the book is apolitical, Rahman does have opinions on the NHS and the government’s management of it. In the chapter Physical Health and Medication Reviews, Rahman notes about the health and social care system:

The organisational structure enacted through the Health and Social Care Act (2012) has created a system where more national bodies share responsibility for leading work to improve quality. Lack of clarity about the roles and responsibilities of different national bodies in relation to quality is not a new issue, but the reforms undertaken in the last parliament appear to have exacerbated the situation.

The Act has been one of the most heavily criticised pieces of legislation of the decade. And Rahman does hold his own views on how it has impacted on patient care. He told The Canary:

This Act needs to be repealed. This Act had no clause on patient safety, apart from getting rid of the National Patient Safety Agency. It also promotes the failed doctrine of economic competition to improve quality – for which there has never been any convincing evidence. The competition promoted in section 75 is the direct legal antithesis to integration, needed for providers of services to collaborate.

Integration vs monetarism? 

Rahman discusses this in more detail in Chapter 10, Care Homes and Integrated Care. It talks about the different environments for dementia patients, and how hospital and care setting could, and should, be integrated. Rahman covers swathes of ideas in this chapter. And the current government’s drive for an integration of health and social care makes this chapter particularly pertinent. It also relates to the NHS’s own Five Year Forward View. Rahman says he hopes the reader will come away realising:

…that everybody in residential care is entitled to the best health and wellbeing. It is essential that there is no discrimination between physical and mental health: ‘parity of esteem’.

But with the integration of health and social care comes challenges. The government and local councils have cut funding for social care so much that last year the Care Quality Commission (CQC) regulator warned that services were at “tipping point”.

‘Co-production’

In Enhancing Health and Wellbeing in Dementia, Rahman discusses ‘Co-production’. This is where all stakeholders work together in the best interests of the patient. This can be challenging in health care at the best of times. But with the strain being as it is on social care, this vision could remain just that. Rahman said:

‘Co-production’ is more than simply ‘listening to the voices’ of patients for marketing purposes or getting business models or grants approved and awarded respectively. It is essential not to generalise cynically, of course. But the co-production movement, which includes co-design, has its heart in the civil rights movement in the US, and of course is currently being bastardised to rubber-stamp in places contentious reconfiguration often where genuine stakeholder involvement has been minimal.

But for me this is a crying shame, far from the roots of the co-production movement, which is firmly footed in the strands of social justice, equity, fairness and human rights. I don’t feel, putting it diplomatically, that social justice is high on the agenda of the current sustainability and transformation plans from NHS England.

Sex and spirituality

The book’s real strengths lie in the areas where Rahman deals with ‘taboos’ surrounding dementia. Both with the issues facing the patients themselves and their support and care. He tackles the subject of sexuality, for example, head-on. Talking about the balancing act between a person’s well-being and their sexual needs, Rahman notes that:

Sexuality and sexual needs in older adults remains a neglected area of clinical intervention, particularly so in long-term care settings.

But this does not mean that carers need to continue ignoring people’s sexuality. As Rahman points out, if it is possible to combine expertise from industry, academia and “caring professionals”, then more can be done to remedy this neglected area. This does not mean, though, that it still is not a challenging area of care.

Restrictive acts

Often dementia patients fall under the Mental Capacity Act, with regards to Deprivation of Liberty guidelines surrounding decision-making. This can present huge obstacles regarding a person’s free-will to make their own choices. Patients often end up pushed between clinicians, social workers, care workers, and families. All of whom may disagree on the appropriate choices that should be made on their behalf. And Rahman recognises this:

The current Government are still flirting with the abolition of the Human Rights Act 1999 though I note that they state that, in their White Paper published on 2 February, even despite ‘taking back control’, we’ll still remain under the jurisdiction of the European Convention of Human Rights. The fundamental tenet of this is that people’s human rights are universal and inalienable. You can’t therefore discriminate between people, and theoretically this might even include capacity howeverso defined.

The English domestic law is still in a state of flux, and my intention in this final book was simply to start a discussion that residents in care homes might have spiritual and sexual needs. Not talking about them, as professionals or not, won’t make them go away…

His own journey

The challenges a person faces with dealing with dysfunctional cognition are ones which Rahman recognises in alcoholism. A recovering alcoholic by his own admission, his battle with addiction has tarnished his life. “Like most alcoholics in recovery, I feel pretty gutted how I allowed myself to destroy my life”, he says. But he also believes that anything can happen to anyone at any time:

I don’t take anything for granted, and people like me in recovery live ‘just for today’. But the fact I have made monumental mistakes means that I am firmly footed in my own failings currently. I think I can spot the people who want to make a genuine difference from those who are clearly playing the system. I don’t wish to be popular – and that’s very probably just as well now, if my book makes certain people with big job titles in the ‘dementia industry’ stop and think for a moment.

An ethos which is really hard to explain to people who’ve never been in a similar situation is that I do as much as I can do in the present. Coincidentally, I’ve been told by many people living with dementia that this is what they try to do too.

A battle with society

Rahman believes that people who are addicted to a substance are completely powerless over their behaviour. And as an alcoholic myself, I would agree with his assertion. There’s an underlying reason why every addict becomes lost in the mire of their issues. It’s a feeling inside of you. A torment, a profound sadness and wrench in your gut that you just cannot tame. I imagine that, if asked, the majority of people would say they have demons haunting them. But most people don’t have to take excessive substances to keep those demons at bay.

Rahman thinks that often people don’t even realise that they are using a substance to self-medicate their mental health:

At the moment, certain people are generally uncertain about whether they are addicted to alcohol or not. Having a social drink is very common, but I know I can get addicted to alcohol because I can never stop at one drink. Also, I feel that while people who are addicted can do bad things, people who become addicted I don’t feel are inherently evil people. They instead need help, and this needs health and social care services to be pro-active rather than re-active (without as such doing outreach). I would like people to know that going into recovery but living a fulfilling life is possible.

I genuinely feel the most content that I have been, and to quote Mandy Rice-Evans, I would say that wouldn’t I?

The future of dementia care?

And he is equally optimistic, yet somewhat cautious, about the future of dementia care:

The current government and its supporters are keen to spin that you don’t necessarily have to pay for ‘good care’, but we all know that the chronic underfunding of NHS and social care is producing the perfect storm for another ‘Mid Staffs’ to occur. It can’t be the case that a 35-hour trolley wait can be called ‘dementia friendly’ by any stretch of the imagination. But then again – there are some brilliant professionals and practitioners, in health and social care, and paid and unpaid carers who do outstanding work daily.

Before I became a journalist, I was a key worker for people living with both dementia and learning disabilities. So I understand the complex and emotionally-fraught issues. And I also have personal experience. Rahman deals with all of this in a warm, non-judgmental, and compassionate way throughout the book. He also gives the reader pause for thought. Namely about what people living with one of the cruellest conditions need from those closest to them. And it’s Rahman’s own humanity that shines through in Enhancing Health and Wellbeing in Dementia. A remarkable book, from a remarkable man.

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