Dementia….what’s in a word? by Dr Iseult Roche

Jeremy Hunt’s outstanding pledge to tackle Dementia in the UK at the international summit in Paris, is welcome news.

The exceptional step regarding the pledge to aid faster diagnosis times for those with suspected dementia, further funding, better awareness through partnerships with large businesses, leading the research agenda and also a dementia Tzar to promote the cause, must surely lead to progress and breaking down of barriers.

However, some sufferers, with early stage of the disease, fear a ‘one size fits all label ‘ could be created.

The majority of the UK referrals for an absolute diagnosis are already at the 6 week proposed time scale, although it can vary significantly and unacceptably in some areas – highlighted already as Sheffield and Cambridge and Peterborough (1)

However, at present, regardless of an absolute diagnosis, treatment is still very limited and although some medications may be beneficial and supportive management via memory clinics can be useful, there is no definitive cure or optimum treatment.

There are many forms of dementia and each can progress differently and will also vary in progression and impact from one person to the next. As such, from speaking to sufferers and their immediate families since the good news of this pledge was released, there has been slight caution from some – who fear stigmatization and preconceived ideas go hand in hand with the diagnosis.

There can be no doubt that the improvements outlined by Jeremy Hunt are welcome, however it may be important to remember that any term can have a double edged sword.

In an ideal world, a definite diagnosis would lead to optimum treatment, support and future planning for sufferers, families and carers… But in reality it will take considerable time and education for most people to gain better understanding and an equally long time for stigma ( both perceived and actual ) to fade. Perceived (self) stigma can be equally damaging and could also contribute to depression.

One early staged sufferer told me they did not want a “label” which would “mark them out” and continued that although their memory wasn’t what it was, once it was ‘labelled’ “you feel it takes over your personal identity” As they were still functioning well and were competent, I could see this was possibly a valid point (at least while the progression was still early).

However, my personal thought was that surely absolute diagnosis is useful, I was contemplating this, when I saw a patient, accompanied by their son.

This very elderly patient * had presented with a minor physical entirely non-dementia related issue, was functioning at home well, lived alone, was independent of daily needs (although had meals delivered ) and upon conversation was fully oriented and competent… They were due to move in with their son that week.

In their medical history was a diagnosis of early stage dementia

Their minor medical treatment was given. Physically all was stable and socially all was safe, however, from an emotional perspective this was the tip of an iceberg.

The patient’s son could not get passed the diagnosis of ‘early stage dementia’ and constantly questioned the validity of his parent’s opinion, behaviour, state of mind and coping ability.

He was paralyzed by the diagnosis and it had detrimentally impacted on their relationship and the way he perceived his parent…. He had ‘lost’ his parent and the person in front of him . In reality this was a very sad situation as his parent was very much there! Interlaced were also his personal fears of developing it too, which he mistakenly thought was a certainty.

This demonstrates the need for better education and support – and shows the dementia pledge is a huge step in the right direction, it will be down a down a long path. Society will undoubtedly change with this pledge and with an aging population this is an area which will become more dominant. However, social support factors to keep people in their own homes, and provide trusted home care and respite services for dementia sufferers and their families are vital and still need review and progress.

*NB patient details modified to ensure anonymity and confidentiality .

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