Meeting Tommy Dunne





I met Tommy Dunne, I think, the first time I met Chris Roberts. This was at the Alzheimer’s Show in Manchester.

I met Joyce and Jayne there too.

Whilst the first time I met Tommy he told me how he received his diagnosis of dementia, I think our conversations have since then covered quite a range of topics. There’s absolutely no doubt that Tommy loves Everton; and Liverpool; and golf.

Tommy will explain to you, if the conversation comes up, how he was given the diagnosis with the words: “The good news is that you don’t have bipolar; but the bad news is that you have young onset dementia.”

There’s no reply to that really. I think as more research gets done we’ll uncover that there are many more people beneath the age of 65 who are living with dementia.

I have found all the individuals I’ve ever met with young onset dementia very interesting, in fact, but all very different. Invariably, they tell me how their diagnosis totally turned upside down their social and working lives, including interaction with friends and the employer.

Tommy mentions in this video (above) how his dementia was misdiagnosed as a mood disorder. I have found this quite common in fact, and on deeper inquiry I found this to be quite a consistent strand in the literature too.

This means that people with young onset dementia, including Alzheimer’s disease or vascular disease, get told they are primarily depressed or manic by the medical profession. Not only are they potentially given the wrong management, but they are also denied the actual correct way to progress.

There is no ‘right or wrong’ answer on the correct way to progress, but generally the approach is to value what people can do rather than home in on what people can’t do. This means playing to people’s strengths, not weaknesses.

An ability to live better with dementia is of course the essence of a ‘dementia friendly community’. It will have given Tommy enormous pride, as it will have done for Gina Shaw who is equally lovely, to receive one of the ‘Dementia Friendly Awards’ from the Alzheimer’s Society for the SURF project.

The best way to learn about what it’s like to live with dementia is simply to ask as many people you can about living with dementia. People closest to them, including friends and family, will give you a complementary perspective too. This is not information you can get from any books.

Meeting the person rather than fixating on the disease is not, however, to ignore the health and wellbeing needs of that person. People living with dementia and carers also get ill like everyone else, say with an acute exacerbation of bronchitis or asthma, and are entitled to the best care from the NHS too.

It’s an honour to have met Tommy and Joyce. The work that they both do to promote an understanding of dementia is incredible.

It’s not hyperbolic for me to say that I’m proud I know them.

Dementia care has to improve, but the NHS can’t do it on its own

With 850,000 people living in the UK, and 47 million people worldwide, with dementia, the challenge for care and support services after a diagnosis is colossal.

There is actually no such thing as ‘dementia care’. There are about 120 or so different clinical diagnoses which may result in a dementia, a progressive condition of the brain, different from ageing, which can affect any of the functions of the brain. Each person responds differently to a dementia, and your perception of that person is very likely to be different from that of somebody else.

On the whole, dementia care irrespective of care settings should improve, but islands of great care do exist. The big issue is how to share this good practice, and the clinical regulators have been latterly been moving into the territory of improving quality of care through recommendations. Offloading improvements in care onto the regulator would be a mistake though, and costly, because how staff operate effectively in teams and have the right leadership is a matter for concern.

The general public need to have confidence and trust in people carrying out care. That is why the recommendations such as a certificate for carers have to heeded carefully. There is, unfortunately, a long and consistent history of recommendations not being implemented, for example the Francis reviews.

It is clear that the NHS cannot turn things around alone. There’s a postcode lottery currently of how well people living with dementia get treated in hospital, and also their success in entering or leaving hospital.

The funding in social care, in not being ringfenced since 2010, has been falling since 2010. This is likely to result in yet another crisis for the NHS, but politicians have long been screaming ’24 hours to save the NHS’. It would be wrong, however, to view social care as having to bail out the NHS from trouble.

Social care has a pivotal rôle to play in promoting wellbeing and to ensure that people with dementia are not discriminated against in the provision of local services. One of the biggest fallacies about ‘dementia friendly communities’ is that it is cost neutral. Local authorities are required to invest money in improvements, if services are to comply legally with a requirement for reasonable adjustments under current equality legislation.

Dementia as a long term condition is important for a number of different reasons. It places demands on both the person living with dementia and the person who is closest, friend or family member. It is also both a physical and mental health issue simultaneously. Therefore, having proper plans ahead of crises, involving input from different disciplines, is much better than acute admissions (which will also sometimes be necessary.)

People living with dementia also get ill with conditions other than dementia. It would be a neglect of duty for persons with dementia not to be given access to an acceptable standard of NHS care, whatever the care setting. A person with dementia might get depressed, might fall, might sustain a fracture, or might also have an infection.

Persons with dementia having other illnesses (‘comorbidity’) tend to worse in outcomes than those persons without dementia. They also tend to stay longer in hospital for the same event, such as an acute exacerbation of pneumonia.

The voluntary sector has a crucial rôle to play in the provision of dementia care and research, and building capacity of the voluntary sector will help to build improvements in dementia care.

There is a need for dementia advisors and dementia support workers, but there is also a desperate need for clinical nursing specialists in dementia.

In the same way that research funds for cancer far outweigh those for dementia, the kudos and investment in clinical nursing specialists in cancer, from Marie Cure and the Macmillan, is staggering.

It would be arrogant of the medical profession to say that shared decision making is inconsistent with the use of evidence based medicine, as if patients of the NHS are incapable of making the best evidence-based decisions.

Care pathways have hugely helped to decrease the uncertainty in cancer, and their use in cancer have been a spectacular success.  When most people receiving a diagnosis from their GP feel utterly bewildered, a war against care pathways is utterly inappropriate.

The NHS needs to be able to work with the voluntary sector, in improving the training and standards of care for people living with dementia and carers. For some, it will be difficult to give up deeply entrenched views about the doctor-patient relationship, but I strongly believe this would be dangerous. Shared decision making is hard to escape when you consider that the health and wellbeing of a carer can be a major factor in determining whether a person with dementia enters a residential care setting.

The NHS and social care need to be given the right resources to succeed, but likewise all parties need to be able to sit down round a table to work out how they can best benefit a person with dementia. In time, people from different specialties, such as housing or transport, will need to sit at this table too. Persons with dementia remain persons, whether or not they are patients, and the NHS should be ready to meet their needs.