The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)

 

·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.

 

Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...

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