HILDA HAYO, CHIEF ADMIRAL NURSE AND CEO OF DEMENTIA UK – WHAT’S CHANGED IN 10 YEARS

We are asking our supporters from the very first Alzheimer’s Show in 2013 to give us their thoughts on what’s changed in 10 years.Here we ask Chief Admiral Nurse and CEO of Dementia UK, Hilda Hayo to share her views.

Hilda, Dementia UK supported the event from the very first show in 2013. What have been the most significant changes (for better or otherwise) over the last 10 years in supporting those with dementia?

The PM’s Challenge on Dementia (2015) put the spotlight onto dementia and this resulted in key aspirations being set to improve the care and support for people living with dementia by 2020. However, the finances to make a significant difference to the services and support offered were not ring fenced to meet these aspirations. The focus was mainly on prevention, cure and awareness raising and very little on post diagnostic care.

There has been a focus on getting the diagnosis rate to 66% for dementia over the last few years and this focus still continues. The issue with this is why is 66% diagnosis rate deemed to be acceptable for dementia when for other conditions there would be an outcry over only having a 66% diagnosis rate. Also initially when this diagnosis rate was being increased GPs were paid £55 for every dementia diagnosis given once this was removed the rates started to drop. Covid has caused a further reduction in the diagnostic rate due to services and support being suspended or reduced during 2020-2022. In addition to this some GPs were not referring people to memory assessment services.

It is not sufficient to give a person and diagnosis, they also need to receive appropriate advice, interventions and support. This has been lacking pre-covid and since covid many of the services and support that was available has reduced or ceased entirely due to funding issues, staff shortages, changes to how people access GPs and other health and social care services.

The National Dementia Strategy was published in 2009 setting out a vision to transform dementia services and unfortunately there was not the ring-fenced funding to put into practice large parts of this strategy. There was supposed to be a new dementia strategy released in 2022 but this has been put on hold with no planned date of delivery.

To what degree do you feel dementia awareness has increased in 10 years, both among government decision/policy makers and the general public?

There has been an increase in the public’s awareness of dementia over the last 10yrs this is partly due to the media, Dementia Friends initiative, PM’s 2015 Challenge on Dementia, people living with dementia and work by dementia focused charities. Since 2020 the Government has placed less of an emphasis on improving services and support for dementia.

Is there enough dementia training available for professionals?

There is the training available but often this is not easily accessed by professionals. Dementia is not consistently given adequate time or coverage on pre registration/qualification programmes for health and social care professionals. If dementia training and professional development was incorporated into health and social care training programmes in a meaningful way the care and support of people living with dementia would be considerably better.

There is an increasing number of support products available designed for helping those with dementia – do you feel this is for better or otherwise?

The growth in support products is good on the whole as it gives more choice for people living with the diagnosis and their families. However, some of the products are expensive and are of limited use and families may purchase them only to find out they aren’t suitable for their situation. One area that I think is rife for possible exploitation are the various supplements and dietary aids that indicate they can prevent or even cure dementia.

When it comes to drug research and development over the past decade, what have been the most influential or offer the most potential, in your opinion?

The latest drug development, lecanemab, looks the most promising so far, there have been many others that were initially thought to be effective but eventually did not live up to the hype.

How can we improve the social care system?

The only way to improve the social care system is to spend substantial amounts of money on setting up social care to meet the needs of people living with dementia and their family carers. Due to many years of cuts to services and support, lack of investment and low numbers of staff due to poor pay and conditions, social care is not able to meet the needs of people living with dementia and their families. More needs to be spent on social care and the health service but unfortunately due to the current economic conditions I can only see the problems worsening over time due to chronic lack of investment and an ever-reducing workforce.

Sorry this is so gloomy, but it is really bad for families impacted by dementia at present. We are seeing an increasing number of contacts to our services which necessitate a safeguarding referral where families are at the end of their tether or are significantly at risk of injury due to the lack of support on offer in their local area.

For more information visit https://www.dementiauk.org