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Dementia Diagnosis

Volume 832: debated on Monday 4 September 2023


Asked by

To ask His Majesty’s Government what assessment they have made of the recommendations in the Alzheimer’s Society report Improving access to a timely and accurate diagnosis in England, Wales and Northern Ireland, published in May, on ways to improve and futureproof the system for dementia diagnosis.

My Lords, while no formal assessment has been made of the Alzheimer’s Society report, we welcome research that will help us to improve and future-proof the system for dementia diagnosis. NHS England remains committed to the national ambition of diagnosing two-thirds of people over 65 years of age who are estimated to have dementia. Timely diagnosis of dementia is vital to ensure access to advice, information, care and support to help persons live well with dementia.

I thank the Minister for his response. There has been some hopeful news regarding dementia in recent months that suggests that we are potentially on the cusp of new treatments that, while not curing dementia, could help delay or at least reduce the level of significance of the disease. But that is effective as a form of treatment only if it is not too late in the progression of the disease for the individual. In light of the report that suggests that a lot more work needs to be done on dementia diagnosis, can the Minister outline what specific steps the Government are taking to improve early diagnosis for dementia?

I thank the noble Lord for his question and pay tribute to his work on the APPG on Dementia. Timely diagnosis of dementia is vital to ensure that a person with dementia can access advice, information, care and support to help them live well with the condition and remain independent for as long as possible. NHS England is committed to increasing dementia diagnosis rates. NHS England’s 2023/24 Priorities and Operational Planning Guidance provides a clear direction for ICBs to support the delivery of timely diagnosis with systems.

My Lords, will the Minister tell the House what has happened to the pilots that were announced, due to start earlier in the year, about the identification of dementia? In particular, will they deal with the very large variation in diagnosis rates across the country?

The noble Lord raises a very important point. He is right that there is substantial variation across integrated care boards in dementia diagnosis rates. NHS England has commissioned a dementia intelligence network to develop a resource to investigate that very issue. It is important that we learn from the very best so that we can put in place an industry-standard best practice to make sure that we get the very best across the country.

My Lords, is the Minister concerned that there may be misdiagnosis of Alzheimer’s in people who do not speak English as their first language because of the use of verbal cognitive function tests? What are the Government doing to ensure that appropriate tests are available for people from all the different linguistic groups that have a significant presence in the United Kingdom?

We try to diagnose right first time, but the noble Lord mentioned the important point of different languages. I do not have a specific answer on what we are doing about that, so I will write to him.

My Lords, timely and accurate diagnosis of dementia is also important to the families of such patients, who are often providing care in very difficult circumstances. While commitment to patient confidentiality is of course important, does the Minister agree that such information must be shared as soon as possible with the families who are providing care?

The noble Baroness is entirely correct. We want a society where every person with dementia and their families and carers receive high-quality, compassionate care from diagnosis through to the end of life. NHS England is committed to delivering high-quality care and support for every person with dementia, and central to that is the provision of personalised care and support, with planning for post-diagnostic support. This is a terrible disease and not one hat fits all, so, as the noble Baroness points out, we have to personalise it wherever we can.

My Lords, I am grateful to the Minister for his answers on the diagnosis of dementia. Will he also outline what is being done to measurably improve the structures of support for those diagnosed with dementia, not least in the early stages, given the increasing social isolation that sufferers experience and the onerous costs they must often bear? This is increasingly evident in our parishes, in our wider communities, in the experience of clergy up and down the land and in my own diocese of Southwark.

The right reverend Prelate raises a very important point. I refer him to my previous answer, but he is absolutely right to point out his diocese and parishes across the land. The NHS can do only so much, but it is important to have communities coming together. In my experience, the Church does a fantastic job, including the community groups that church organisations and others have at the very local level. Not everything can be done by the NHS, but people in communities can help carers, families and those with dementia to a very high level, in my experience.

My Lords, people with learning disabilities are more likely to develop dementia, but particularly in complex cases of learning disabilities the symptoms are very often masked. What can be done to help those who care for people with learning disabilities to spot symptoms early on, so that diagnosis can take place and treatment can begin?

The noble Baroness is exactly right. She raises a point about carers. Carers are not professional people; they are loving partners who vary in their experience and knowledge of this disease. I do not have a specific answer to her question other than to say that, generally, carers are far more recognised than they used to be and do a fantastic job. In fact, we would not be able to look after those 600,000 people in the country without those individual carers. I will write to her with a more specific answer, but she is absolutely right that carers are key to the care of people with dementia.

Is not the key word “timely”? In relation to that word, is it not time that the junior doctors throughout the United Kingdom recognised that timeliness in relation to many conditions is being jeopardised, so long as they continue to go on strike week after week? Should they not recognise the Hippocratic oath that they took in the first place to do no harm to their patients?

My noble friend raises a very important point. It is important that junior doctors and others come to some agreement and do not continue with their strikes. I understand that there are strong feelings on all sides, but we all have to work together—carers and healthcare professionals—to do what we can for people suffering from this dreadful disease.

My Lords, one of the important points that emerged from the report was on the importance of workforce training. In many instances, the first point of contact for anybody with such symptoms is their GP. Can the Minister outline what steps the Government can take to ensure that GPs are trained to identify dementia symptoms and differentiate between types of dementia?

The noble Baroness is absolutely right. There are different types of dementia at different stages depending on the individual and their age. Unfortunately, it can start very early on, in their 30s and 40s. In my experience, GPs and their practices are very well trained and knowledgeable in such matters. If the noble Baroness has any specific concerns in her area I can certainly look into them, but GP services do a very good job overall. We also have on our high streets things such as dementia awareness, where retailers and other public services recognise the early signs of dementia to make sure that people get the services they require.

My Lords, the Minister may recall that I asked a Question about dementia palliative care teams before the Summer Recess. Can he give the House an update on the progress in rolling these out around the country?

I do recall the noble Lord asking that Question, but I do not have that information to hand. I cannot update him in person, but I will certainly write to him in detail.

My Lords, we know that there is a national shortage of care homes, but when people have dementia, getting into a care home becomes even more difficult because many care homes do not cater for patients and people with dementia. Will the Minister acknowledge that this is an additional problem to the care home problem that this country has, and tell us what his department is doing to address the drastic shortage of care home places for people with dementia?

That issue varies around the country. In some areas, there certainly are shortages; we all know of examples where there is a shortage of beds for dementia services. Some areas are better than others and more can certainly be done, but the noble Lord highlights a very good point. Most families will agree that it is very important to keep dementia sufferers in their own home. That brings us on to the point about carers and communities working with families to keep those dementia sufferers in their own home for as long as possible.

The Minister has recognised that dementia diagnosis rates vary significantly across the country, but we are less sure about exactly why. Does the Minister agree that, without this key information, it is impossible to address the current diagnosis postcode lottery? What steps are the Government taking to bring the diagnosis pathway up to the required standards everywhere, and what consideration have they given to the introduction of culturally relevant assessment tools to support this?

NHS England is taking several actions to improve diagnosis rates. In the financial year 2021-22 the Government allocated £17 million to the NHS to address dementia waiting lists and increase the number of diagnoses. NHS England is sharing learning on good practice with dementia clinical networks. There is a substantial variation of ICBs throughout the country, as I said previously, and the Government have recognised that. That is why they have commissioned the dementia intelligence network to investigate this and report back.