The Law Of... listening to people with dementia and their carers

It's a sad reality that 38% of people living with dementia don't think that they have a choice over how they live their lives. To ensure that the voices of those living with the condition are heard, the Department of Health started a new programme on the 2nd of November 2016 aimed at understanding the experiences of people with dementia and their carers.

Zena Soormally, Solicitor for Simpson Millar's Court of Protection team, looks at how reaching out to those living with the condition can make a big difference to the thousands of dementia sufferers in the UK.

Surveying The Nation

As part of this programme, individuals who have been diagnosed with dementia since November 2014 and those who provide unpaid care for them have been asked to take an online survey, or fill out a paper-based version of the survey.

The survey, which is open until 31 January 2017, asks questions around:

  • People's experiences of being diagnosed with dementia – this includes finding out how well the diagnosis was explained, whether individuals were given the appropriate information following the diagnosis, and whether any changes need to be made to this process
  • The kind of support that's available for those with dementia and their carers – those with the condition can also discuss how much say they had over the kind of support that they have been given
  • Individuals' overall awareness of dementia – these questions aim to get an idea of how society perceives dementia and how individuals who have the condition or carers working with them are treated

Local dementia groups will also have the chance to discuss the questions in groups or on a one-to-one basis, and can then send any feedback to the Department of Health.

To help these groups and individuals get the most out of the programme, the Department of Health has created some guidance that includes practical tips on how to organise and lead discussions.

The results from the survey will help the department evaluate how well the Dementia Challenge 2020 Implementation Plan is working, and whether the support and services available need to be improved.

Zena comments:

"It is so important that those on the ground who really know about day-to-day life with dementia have a voice and can engage with the government on this important issue."

"This is the best way for the government to get an accurate understanding of what's working well, what isn't working and why, and what improvements can be made."

"If enough people know about it and were willing to take part, I think this programme could really change the lives of those living with the condition and caring for them. I will be encouraging all of my relevant clients and their family members to take part, and I hope that the plans are circulated widely."