Supporting Those Who Care

Sitting at home with a wretched cold today (BTW before my mother's descent into dementia I was rarely ill but have been felled by infection after infection over the past 18 months...) I have been hearing John Suchet talking movingly in various radio and TV interviews about his wife Bonnie, who has dementia and the struggles he has faced to come to terms with grieving for someone who is still there.

Some things really stand out from Mr Suchet's interviews, not least the strong message that dementia is an individual journey which resists the categorisation of a rigid and inflexible system. For example, his wife performed well in the original cognitive tests and it was only because of a further incident that a full battery of tests probed further to confirm a diagnosis. Likewise, my mother has consistently 'passed' these tests as a result of her 'pre-morbid intelligence' and we have had to fight at every stage for a more bespoke recognition of her individual struggles which don't necessarily fit into these templates.

I was also struck by the level of support he had received and how this had enabled him to support his wife and to cope with the pressures. I have never had any contact with Admiral Nurses and we have been struggling by ourselves throughout, so I had a quick look at Dementia UK's website. I was suprised to see that the NHS Foundation Trust which has been overseeing my mother's care since August 2008 actually has an Admiral Nurse service. This has never been flagged up to us by the Trust and how I wish we could have had the benefit of a nurse like Ian who has been Mr Suchet's bedrock, emotionally and practically. This lack of proactive connnection and information provision shows how much is thrown back onto individuals to find out themselves and how much this kind of support is ad hoc and contingent on a lucky conjunction of a supportive and informed care team. This kind of support should be a standard - if not provided within the NHS then at least with the NHS and Social Services team having a duty to provide a checklist of support of all kinds available for the person with dementia and those who care for them in all senses.