Health: Dementia

Question

Asked by

To ask Her Majesty’s Government what is the national average waiting time for a referral to a memory service following a suspected dementia diagnosis; and how this has changed since January 2020.

My Lords, data on wait times for referrals is not collected for memory services. However, NHS Digital does collect data on new memory assessment referrals, which saw 2,136 people referred to a memory service in May 2021—a 17% increase compared to April 2021. This compared to 2,896 new referrals made in January 2020. The Government take referrals extremely seriously: they have made £17 million available this financial year to NHS England and NHS Improvement to support memory services and increase diagnoses.

I thank my noble friend for his Answer and declare my interest: my brother is a trustee of Dementia UK, an organisation which recently produced a report, Facing It Alone—which I hope my noble friend has read—highlighting the challenges faced by families and health professionals when tackling dementia. What steps are the Government considering to address the gap in diagnosis and access to post-diagnostic support, such as increasing the number of admiral nurses and the amount of primary care, as called for by Dementia UK? Will he also consider facilitating a meeting between the appropriate Minister in the other place and Dementia UK to discuss what more can be done to meet the requirements of these vulnerable people?

My Lords, I pay tribute to the role of admiral nurses and the model developed by Dementia UK; it is indeed a very valuable contribution. The dementia team at the department met with Paul Edwards, director of clinical services at Dementia UK, in April 2021, to discuss how we could work together more closely. I am happy to follow up on that meeting with any recommendations that Dementia UK might have for how we can focus on this important area.

My Lords, is it not the case that there are just not enough diagnostic consultants and memory service nurses to reduce the waiting list that the noble Baroness, Lady Couttie, referred to? Given the number of people with dementia who, sadly, have passed away during Covid, when will the Government change the law to enshrine the rights of care home residents to have family visits?

My Lords, the focus on diagnosis is critically important. That is why Challenge on Dementia 2020 set a target of two-thirds of people living with dementia receiving a formal diagnosis. At the end of May 2021, DDRs were 68.8%, compared with 61.7% at the end of April. We are working hard to get these numbers back up, and the £17 million fund which I referred to is one contribution to that. But the noble Baroness is entirely right that this is an important area, and we are focused on it.

My Lords, during Pride month, the Alzheimer’s Society and Opening Doors London did a lot to highlight the experiences of LGBT people with dementia. Does the Minister agree that when the Secretary of State for Health insists on wearing a rainbow badge, it is unacceptable for people to turn up to services only to be misgendered or to have their family relationships ignored or undermined, and that there should be a process of sorting out training for staff so that people are dealt with appropriately?

My Lords, I take seriously the testimony of the noble Baroness. I am not aware of the specific concerns that she describes, nor am I completely up to speed on the precise arrangements of the training, but I would be glad to correspond with her on this matter.

My Lords, while virtual assessments were vital during the pandemic, without further diagnostics many led to a diagnosis of unspecified dementia. An accurate diagnosis of dementia subtype is critical to good management, especially in complex cases. Given the backlog, there will understandably be a temptation to deprioritise those who have a preliminary diagnosis from a virtual assessment, but this would be a false economy. How can the Minister ensure that those with a provisional diagnosis will be invited back for a comprehensive assessment after the pandemic has finished, and for imaging and other diagnostics where necessary?

Few people are as enthusiastic as I am about the benefits of digital medicine and virtual consultations, but I completely acknowledge my noble friend’s point: this is one area where we absolutely must have face-to-face assessment. The diagnostic tests and assessments she describes play a critical role, and those whose conditional assessment was done virtually must be cascaded into a face-to-face assessment, as she says. That is why we have put the funds in place to ensure that this backlog is caught up with.

My Lords, not only are there deep concerns about the sharp drop in memory clinic referrals during the pandemic; the Alzheimer’s Society also has very real fears that the virtual assessments currently taking the place of attendance at memory clinics run the risk of exacerbating inequalities in treatment and excluding large cohorts of patients. What is the Government’s overall strategy for ensuring that vital day care and hospital services are reopened and that the backlogs in referrals are addressed, for providing the rehabilitation that people with dementia need to counteract the effects on their cognitive and physical function, and for providing support for their mental health and well-being?

My Lords, guidance to help enhance best practice in dementia assessment and diagnosis was recently updated and published to support a personalised approach and choice in the delivery of remote consultation or face-to-face diagnosis. The guidance was developed in collaboration with stakeholders, including those with lived experience, and through the Dementia Change Action Network. I completely acknowledge the point that the noble Baroness makes. We are working as hard as we can to get the kind of face-to-face assessments she describes. They play an essential role in what we do.

My Lords, the 2019 national memory service audit carried out by NHS London reported that a quarter of English dementia services were unable to provide or refer on for carer psychoeducation. Knowing the struggles that my stepmother had over a decade ago getting recognition, let alone support, as my father’s dementia worsened, these figures remained stubbornly low. Can the Minister say when early support will automatically be available for all carers of those diagnosed with dementia?

My Lords, I pay tribute to the role of carers in the kinds of situations the noble Baroness describes. We are doing an enormous amount to supply training for carers in all facets of their delivery, including support in caring for those with dementia. I am not sure that I can make the guarantee that she seeks right now, but I reassure her that this is one area of our investment in carers that we take extremely seriously.

My Lords, while these patients are waiting for appointments, could some way be found to encourage relatives and close friends to help those with early dementia by having frequent conversations with them and helping them learn by heart poems they used to be able to recite in earlier years? That might also prove helpful to those relatives and friends, because loss of memory tends to affect us all as we grow older.

My noble friend makes a very touching and constructive point, because social engagement and involvement in the community keep older people sharp and their brains engaged and help stave off the ravages of age and the diminution of mental faculties. We all have a role to play in supporting the elderly and those with mental challenges. My noble friend is entirely right to call on the entire community to step up to that role.

I draw attention to my declaration in the register as a dementia champion. The corollary of the question that has just been put is that reduced contact, reduced socialisation and reduced activity accelerate the onset of dementia. Of course, that has been happening over the past 16 months. Will the Minister commit to investing in the voluntary and charitable sector in this area so that it too can play its part in supporting families and helping it to reaccelerate back into social action?

I accept the noble Lord’s point. The corollary is right: there are those who have not had the engagement they once had, and it is fair to assume that that has accelerated their decline. The role of charities and communities in trying to provide that back-up support is critical. That is why we have provided £515,000 to the Alzheimer’s Society to support its Dementia Connect programme.

I am very glad to hear the response from the Minister on virtual consultations, but can I press him to urge an immediate reinstatement of face-to-face memory services and recognise that for those with cognitive and sensory impairments, Zoom is especially disorientating—it is for me, let alone anyone else? Will he also urge GP surgeries to open fully face to face—they are not at present—as doctors often spot signs of dementia when patients access services for other reasons? I think that would help.

I completely accept the noble Baroness’s point. It is clear that the benefits of digital do not play out for the elderly and those who face dementia and other similar conditions in the same way as they do for younger people and those accustomed to and familiar with Zoom and other digital services. She is entirely right that the symptoms and features of dementia, Alzheimer’s and Parkinson’s are sometimes picked up only through face-to-face engagement. That is why we are working hard to reopen GP surgeries and to ensure that such appointments can take place.

My Lords, the time allowed for this Question has elapsed.