Do it for quality of life and well-being!

I attended the 2012 Dementia Congress in November in a very wet and windy Brighton. Simulating as always and a great place to catch up with people from all different sorts of backgrounds.

There were the usual interesting discussions about early diagnosis but also the ongoing search for effective care, prevention and treatment. It struck me that in the absence of this, there continues to be room for an amazing (and sometimes eclectic) range of different interventions and support for people with dementia, from care pathways and life story work through to circle dancing and bird watching, though evidence of efficacy often varied significantly.

One session I attended described an attempt to screen every single patient aged between 75-85 from over 20 GP surgeries for common forms of dementia. Around 8,000 patients were written to and invited in to be screened. Only about 300 came for screening, a response rate of 3.6%, of whom 41 were referred on to secondary mental health services to be assessed for dementia. By my rough calculation one would expect there to be around 1,600 people with dementia in that population. Perhaps some had already been diagnosed but even if services had been achieving a relatively high rate of diagnosis before the screening initiative of say 50% that still leaves around 800 people undiagnosed.

41 doesn’t reduce that figure by much. If we are serious about the benefits of early diagnosis perhaps some form of positive inducements should be offered to encourage people to be diagnosed. Perhaps we should pay people to be screened who knows, it might save money in the long term.

Of course evidence continues to show that stigma plays an important factor in inhibiting people from seeking help and positive representations of people with dementia, such as can be seen through the Dementia Engagement & Empowerment Project can help overcome this. But it’s also really important that people feel confident that they will get effective support post-diagnosis, especially in the absence of cures or universally effective treatments.

Bob Woods’ recent review paper in Quality in Ageing and Older Adults (Vol 13, No. 3) on wellbeing and dementia showed that although there is no evidence linking a deterioration in quality of life or well-being with dementia there are a range of interventions that can improve quality of life for people with dementia.

These include psychosocial interventions for people with symptoms of depression or anxiety (though anti-depressants are not shown to be very effective), helping to maintain a person’s physical health, actively involving family carers, positive staff attitudes, stimulating cognitive function and participation in a range of creative and meaningful activities.

So whether there’s an evidence base or not for interventions on offer, perhaps it doesn’t matter too much – providing it falls within one of those categories and is not causing distress simply apply that famous advertising slogan – just do it!