Dean Russell MP took part in today's Health and Social Care Select Committee, which during Demenatia Awareness Week, focused on supporting those with dementia and their carers. The panel taking questions consisted of Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society, Caroline Abrahams, Charity Director at Age UK, and Sarah Pickup, Deputy Chief Executive at Local Government Association.
Dean's first question was about limiting paperwork for carers and using technology to make the tracking of carers easier.
Dean's second question was about supporting unpaid carers.
Dean's final question was about giving dementia awareness training to the police.
A transcript of Dean's questions can be found below and the full details of the event can be found on the UK Parliament's Committee website here.
Dean Russell
I have several questions. My first builds on the very powerful testimony earlier, and in particular a comment by Jonathan when he mentioned the sheer amount of paperwork required when trying to get support. I am interested in all of your views on how we cut through some of the red tape. Is there a role for technology in having a better way of tracking and monitoring how people are asking for help, and making sure they get it quicker?
Fiona Carragher
Jonathan’s testimony is what we hear day in, day out at Alzheimer’s Society. It is so hard to navigate such a complex system and to get any support, information or guidance.
The other bit to mention is that this goes across the NHS and social care, and there are gaps between them. If you are worried about your memory, you will go to your GP practice, as John described. It may take a long while to get your diagnosis, but you are referred from primary care, probably to a mental health trust, to see an old-age psychiatrist to have your memory assessment clinic. At that point, you may be discharged without any post-diagnostic support because it is incredibly patchy through the country.
The other point is that the majority of care, as we have heard today, is through the social care system. At the moment, there are no treatments that will slow or stop the progression of the diseases that cause dementia. Again, you have to navigate the social care system. Many are telling their stories more than once. There are huge amounts of bureaucracy and no clear guidance on where to go.
Technology is important, but there is a role for dementia navigators, people who really understand your story and understand the needs of the individual. They put what matters to the person with dementia at the heart. That person will help and enable navigation through this really complex system. That is one of the things that Alzheimer’s Society, through our Dementia Connect model, had in the long-term plan as an example of navigating the complexity. It is telling your story once, with technology enabling it to be then shared with multiple agencies. That is a very simple step forward in the first instance.
Dean Russell
Improved integration across the systems, and perhaps technology and people to support that. Thank you. I will come to you, Caroline. Would you agree with Fiona? I have a few questions, so please be brief.
Caroline Abrahams
I would agree, but thinking about the bureaucracy that Jonathan was talking about, a lot of that is defensive on the part of health and social care. They are trying, frankly, to bat away demand, reduce demand and reduce the cost. It is not the case everywhere, but it is a very common experience. If people did not feel the need to safeguard their resource in quite such a vigorous way because they are so broke, I think we would find that behaviour would change. We would need to incentivise that as well, and part of it might be by giving people more rights than they have at the moment.
Dean Russell
Thank you. If I may, Sarah, I will ask you the same question.
Sarah Pickup
I agree; the social care system is set up to ration. First of all, you cross the care eligibility threshold. Then you cross the means-tested eligibility threshold. Then, if your needs really rise, you end up in the continuing healthcare system. We know that areas set budget targets to reduce their spend on CHC when they have tight budgets. If that is the case, it will not be easy to achieve it.
There are criteria, but all criteria are open to interpretation, and there can be a real battle. Integrated and electronic care records could help. We have been talking recently about the Bill that is coming forward on integration and innovation, and around earlier intervention and putting in support before you cross the eligibility threshold. We have to find a way to fund the system adequately so that you can meet the needs of people who have really high needs, and also invest in preparing people, and helping people set themselves up for the future. It does not have to be bureaucratic. The bureaucracy is all about managing the system as it is established in law.
Dean Russell
Fiona, my second question is related to unpaid carers. Of course, we have thousands upon thousands of unpaid carers helping their families every day. Obviously, funding is one aspect that is often discussed, but are there any better mechanisms for supporting unpaid carers in your view?
Fiona Carragher
You are right; there are 700,000 unpaid carers for people with dementia in the UK. We know particularly that what has happened in the pandemic is that they have been picking up the pieces. We did an evidence-based report in October that showed that 92 million extra hours had been picked up by family carers during the first lockdown. They are absolutely on their knees and exhausted coming out of this pandemic.
One of the things that can be done for family carers is that, in the context of the reform and the long-term vision, they are seen to play a key role. Really importantly, it is the relationship. As Jonathan described, it is being the daughter or the son, the husband or wife, not in the context of being the carer or the person who is having to fill in all of the bureaucracy. Going back to the long-term vision, what really matters for people with dementia are those relationships. That is an important part. It is their relationships with their loved ones and with the community. It is giving carers the support that they need, cutting down the bureaucracy and helping with the navigation through the system, so that they can do the thing they want to do, which is to have a loving relationship with someone with dementia.
Dean Russell
Caroline first, and then Sarah on the same question.
Caroline Abrahams
With unpaid carers—I was one myself until very recently—there is, first, an issue about money. If you give up work to care, as many people do, you are consigning yourself to be poor later in life. We must do something about carer’s allowance. We ought to be trying to support carers to keep working, if they can, alongside caring. To do that, we need a different approach to flexible working, which may have been accelerated, helpfully, by the pandemic.
Above all, if you talk to most carers, they really want to do what they are doing. They are doing it because it is what they want to do, but they want some back-up and support. The more reliable the formal care system is, the easier it is for a carer to work alongside it.
Dean Russell
Sarah, the same question again please about unpaid carers.
Sarah Pickup
I agree. A well-funded and reformed social care system will help carers. We need to make sure that any reforms have carers in there and that they are not to one side. Coming out of the Covid crisis, as a shorter-term thing, there may be a case for some direct support for carers. They have not been able to access some of the support. They may have had more caring responsibilities because some of the day services have been closed. People have not been able to access them. Perhaps there is a place for the Government to consider what they could do for informal carers, coming out of the crisis, who have probably had an additional burden and are quite tired and worn out. It is not that they do not want to do what they are doing, but that they have had to do more of it than ever over the last year or more.
Dean Russell
What would that look like, if you don’t mind me asking, Sarah? What would that extra support be for unpaid carers?
Sarah Pickup
The thing that people often need is a break. It does not have to be a respite care-type break. There are lots of good examples up and down the country. Everybody does not get what they need, but there are good examples where people provide a direct payment for a carer to do what they want with, to help them have a break in a way that suits them. There could be a carers’ hub, where you could drop in and access things. There are examples of good practice. You do not need to invent anything new to provide extra support. You just offer a bit more of what you sometimes struggle to deliver.
Dean Russell
I will direct my final question just to you, Fiona, as it is directly related to what you do in the charity and the organisation. One of the really disheartening comments I have had from people when speaking about this topic has been a misunderstanding in the community around people who have dementia. In particular, I had one story told to me about their very elderly relative being in a shop acting in a way that caused some questions, and the police came along and dealt with them in a very bad way. They did not understand that they had dementia. They did not understand what processes to go through.
Many police I have spoken to have been brilliant in that way, but do you think it would make sense on the training side of things to make it a requirement for all people working in the medical profession or in the police to have some dementia-friendly training?
Fiona Carragher
Awareness of dementia is an incredibly important thing. It is linked to the piece around stigma. One of the reasons that we still do not have very high diagnosis rates is the stigma surrounding dementia. Initiatives such as Dementia Friends and dementia-friendly communities, of which we are incredibly proud at the Alzheimer’s Society, are one way to do that.
Specific training for medical and other public sector workers is a really good solution. We run a programme called Time for Dementia. This is a wonderful programme where undergraduate medical and other health professionals, such as nurses, pharmacists and physiotherapists, in their undergraduate training, are buddied with thefamily of somebody who has dementia. Right at the heart of their training they understand the complexities of dementia and what it means to the individual who has that disease, so that as they become more generalist in later life and in their career they will understand a little bit more about that.
There are some great initiatives that are already funded by Health Education England that we could look to roll out to other parts of the country, and to other professions.
Dean Russell
Thank you for all your evidence.
