by Beth Britton
My role as an external consultant to MacIntyre’s Best Practice Health Team is extremely varied, but arguably the most important aspect of everything I do is supporting MacIntyre services virtually and in-person. Additional support is often needed when someone is suspected of having, or diagnosed with, dementia. The aim of this support is for the person, their family and their staff team to have the resources they need to ensure that the person can live as well as possible with the changes they are experiencing.
Visiting MacIntyre services
Being welcomed into someone’s home is always an immense privilege, and recently it’s been lovely to meet people living with a learning disability and autistic people who draw on MacIntyre’s support. Alongside MacIntyre’s Best Practice Manager for Health and Families, Nicola Payne, we spent time with people supported and staff teams, creating action plans before we left each service to help them move forward with what we’d discussed. I also met and worked with Astrid Ubas, one of MacIntyre’s learning disability nurses, who was able to provide a lot of invaluable information.
Whilst much of what we talked about was bespoke to the people we’d come to visit, there were some common themes that I want to share. By doing so we can help more teams understand the positive approaches they can take when they are supporting someone with dementia and a learning disability or autistic people. We can also ensure that we are embracing the World Alzheimer’s Month theme of it being #NeverTooLate to support a person with dementia to reduce their risk of more rapid progression and improve their quality of life.
Tips and advice for staff and services
Make a ‘Top 10’ list
While staff are amazing at creating and updating person-centred paperwork and support plans, important tips and advice can sometimes get lost amongst the detail being recorded. Therefore, we are encouraging services to work with the people they support who have dementia to make a one-page ‘Top 10’ list of things that the person finds supportive. These might be activities or interventions, occupations or distractions, always with the caveat that not everything will constantly work and that it’s important to try and tempt the person’s interest rather than using too much encouragement (aka nagging!).
As Nicola Payne says:
Think outside the box and start an activity hoping that the person will be interested. This way the pressure is removed, avoiding a more stressful situation for the person and their staff.
Create life story resources
We are huge fans of life story work – it really is the cornerstone of person-centred dementia support – and we are signposting all services to the following MacIntyre resources to help get life story work started:
Work towards personalised music
We know that music can be extremely helpful in supporting people with dementia. We are encouraging services to consider making a Playlist for Life with the individuals they support, and to investigate free Purple Angel MP3 players if they are supporting anyone who could cope with wearing headphones.
Continually evaluate the person’s environment
One of the most important aspects of an in-person visit is looking at the person’s environment. We know environmental work is vital for living as well as possible with dementia, so do read our eBook on Dementia Environments and look at the work of Stirling University’s Dementia Centre. As a person’s dementia progresses, we may also need to call in external professionals, like Occupational Therapists, to provide additional equipment and advice.
The medicines people are taking are always considered during support visits because we are acutely aware of the risks of poly pharmacy. We often recommend speaking to a senior pharmacist for a second opinion on medication if services are struggling to speak to a doctor about this.
Learn what staff want from dementia training
We’ve asked all of the services we visited to consult with staff teams about what knowledge they need most, and we’ve discussed different training options with managers. There is no one-size-fits-all approach - we can be entirely flexible. The most important consideration is that what we offer, and how we deliver it, works best for each team as part of their continuing professional development in understanding dementia care and support.
Attend health recording refreshers
This is part of the Health Team’s work to ensure staff are using this fantastic resource most effectively. Refreshers are ongoing.
Support peers and friends
We are mindful that in shared services a person’s peers and friends are experiencing living with someone who has dementia, so we’ve begun providing Book Clubs that use the Beyond Words book Ann has Dementia. We are also providing ‘No Barriers Here’ sessions. Both of these are being facilitated by Rachel Furniss from the Health Team.
Linking to the #NeverTooLate philosophy
We know that people who develop dementia when they have a learning disability and autistic people often find that their dementia progresses more quickly than within the general population. This can be due to factors including living with multiple long-term conditions, the nature of their learning disability and/or autism and personal genetics, health inequalities, diagnostic overshadowing, lifestyle choices, over-medication (poly pharmacy), being forced to move services or needing frequent hospital treatment.
Staff teams can mitigate against some of these factors through their knowledge and experience – as well as implementing the tips above - but there is even more scope to make a positive difference when you consider the 12 most common risk factors associated with dementia and how we might counteract these.
The risk factors we should all have in mind are:
- Physical inactivity
- Excessive alcohol consumption
- Air pollution
- Head injury
- Infrequent social contact
- Less education
- Hypertension (High blood pressure)
- Hearing impairment
You can download an infographic from Alzheimer’s Disease International that details these risk factors, and it’s worth looking at the work The Lancet produced on risk-reduction that was last updated in 2020. This details that hearing loss in the biggest modifiable risk factor, so do bear this in mind and investigate a hearing test for anyone you support, whether they are living with dementia or not. You may need to request reasonable adjustments to help facilitate this test.
Getting support to reduce dementia risk factors
We will be looking in more depth at dementia risk factors and risk reduction at our next Dementia Special Interest Group Meeting on 24 October 2023. Do join us to share your experiences and learn more. Everyone is welcome at our supportive, informative and interactive meetings.