Dementia - Beyond Planning

We have just submitted our draft commissioning plans for 13/14. Pages of trajectories, targets, pledges and aspirations. The team have put a huge amount of effort into the document, translated guidance and the new system, and we are now currently consulting with partners and patients.

One of our local and national priorities will be dementia. We have a national target to increase the number of patients diagnosed with dementia, as have all CCGs. Putting the issue of screening aside, is early diagnosis a good thing? Does it matter if treatments aren't effective for all, if a delay in progression is likely to be the best outcome? We are also aiming to reduce antipsychotic prescribing in patients with dementia. It's important to look behind the targets, to talk to patients, to see if what we are doing is likely to make a difference.

So I recently met a group of carers, all with relatives with dementia. They were an inspirational group of people, and it was one of my highlights as a CCG Chair to spend some time with them, realising how they provided mutual support for each other. It was also clear that they shared their frustrations, their anger with the condition and with the care system. There were plenty of tears during the meeting. This was the reason behind the plans.

Clear themes emerged from the discussion.

Diagnosis

All used a common word to describe the process of diagnosis. It was a 'battle'. In some cases it took years. The younger the patient, the harder it seemed. Stories were relayed of stressful trips to tertiary centres, to see specialist neurologists, only to be told their loved one's memory was not as good as it used to be. 'I'd told them that, I'd known him for years.' Nearly all had been diagnosed with depression first. 'If he was depressed, it was because he knew what was happening. No one took into account his family history of dementia.'

All agreed that early diagnosis would have been beneficial. But it wasn't just about treatment. It was clear that they valued the mutual support available, the benefit of talking to other carers abut how to cope with difficult behaviour, how to reassure an anxious husband or wife, avoid unnecessary medication. A recognition that their husband wasn't himself, that they were right and that they could explain the diagnosis to people.

Continuity

After diagnosis what was the most valuable aspect of care? Continuity. There was significant anger at changes to carers, to services that had been changed. Trusting a carer was so important, establishing a routine crucial. Changing times of service offered, the carers involved and worst of all insisting on a move to a different care home had significant effects on patients and their families.

Understanding

Carers weren't embarrassed by their loved one's behaviour or condition. But they did want understanding and compassion. This included health professionals, carers and the public. There were positive stories about the police, about officers going above and beyond to make sure patients were safe. What would happen if someone forgot to pay and walked out of a shop? This was a cause of some anxiety for some of the carers and patients.

Most said it would have been easier if the diagnosis had been cancer. There would have been a clearer path to diagnosis, more certainty regarding progression, more understanding.

Back to planning

This was the story behind the plans. We have already significantly improved the community memory service and commissioned an excellent outreach team. But we can do more - improving diagnosis accuracy, access to local scans and specialists. But its what we do afterwards that matters most. Focus on continuity, avoiding unnecessary antipsychotics. And listen to carers.


Bassetlaw Dementia Summit is on 5th February, bringing together more than 100 carers, professionals and partners including surgeries, hospitals, voluntary services and emergency services.