Dementia Action Week 2023- The importance of post-diagnostic support

Professor Emma Vardy has been a consultant at Salford since 2015. She is clinical lead for frailty at the Northern Care Alliance. She is an honorary clinical chair with the Manchester Academic Health Science Centre. She is the Greater Manchester NIHR CRN ageing specialty lead and deputy lead for the HM NIHR ARC healthy ageing theme. Professor Vardy has a number of research publications in the areas of dementia, delirium, frailty, digital, and quality improvement.

The focus for Dementia Action Week 2023 is diagnosis. Relevant to this is an excellent new report from the Alzheimer’s Society: ‘Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland’. The recommendations include adopting a multi-disciplinary approach alongside innovative ways of working and enhanced sub-type diagnosis. However, as a result of my own personal experience, I’d like to focus on the topic of supporting someone with dementia after they receive a diagnosis. My Dad received a diagnosis of dementia during the COVID-19 lockdown. More recently, family illness exposed the frailty of the support structures available to my family. I’d like to share something of my experience as it’s highlighted to me that as healthcare professionals working with people with dementia, who are in contact with people with dementia and carers outside of the memory clinic setting, we have a role in knowing about locally available support services and connecting our patients to them. Though in recent times I have seen the good, the bad and the ugly of post-diagnostic support for dementia, I want to use this blog to share the positives.

Helplines

Not all areas have access to an Admiral Nurse; however, Dementia UK do run a helpline. Though calls may not always be answered immediately, an Admiral Nurse will make contact within 24 hours of leaving a message. They are also able to offer a 45-minute remote consultation which can be pre-booked.

Social services

Contacting local social services directly can be very helpful, to request assessment for the person with dementia and also for the person caring for them. Some social services have related services, such as access to an occupational therapy review. What can be difficult is access to a specialist occupational therapist in mental health if the person has been discharged from memory clinic services where this is more likely to be available.

Post-diagnostic support

Post-diagnostic provision tends to be delivered through organisations such as the Alzheimer’s Society or Age UK. Knowing which organisation is active in your local area can help signpost carers of people with dementia to the support needed. The relevant organisation can then be contacted and, in my experience, be very helpful in explaining what is offered locally: for example, dementia cafes or other groups. The Alzheimer’s Society has a website with local dementia-friendly activities. It is important to look at the degree of dementia to which the organisation caters. A service listed as being suitable for people with mild dementia might not be suitable for people with moderate stages of dementia if, for example, the carer wishes to go and do shopping.

Local voluntary organisations

Getting to know your local voluntary organisations is really important. To give a specific illustration of this, local to my workplace in Salford is an organisation called Empowered Conversations. With funding support, Age UK Salford offer free communication courses (Empowered Conversations and Moving Beyond Words) for all caregivers of people living with dementia in Greater Manchester, and free dementia-specific therapeutic sessions (Empowered Carers) for Salford family caregivers. The team also offer a paid-for service for caregivers outside of Salford who want Empowered Carers sessions and has been working with organisations to provide this support for employees caring for family members living with dementia (www.empoweredcarers.co.uk). To my shame I had never referred anyone to this service. Having received an email update, I mentioned how useful it would be to have something similar local to my parents. The team responded saying it actually is available virtually out of area for a fee. They’ve helped support my mum and, I would say, transformed life for her and my dad. This is just one example and I would encourage you to find out about what is available locally and how to make contact.

As for my Dad’s story at the start of this journey, it’s fair to say I was hugely despondent and frustrated with the ‘system’. What I’ve learned has been helpful both for my family but also in my job as a geriatrician. I had a recent telephone conversation with my mum where she explained to me, ‘you need to keep the person doing things and not just do it for them, because if you do, they may not be able to do the task the next time’. Living well with dementia my Dad certainly wasn’t, but for now, I’m seeing that this is possible, at least for the time being.