Advocating for Neuro ProActive has provided many introductions to numerous neuro visionaries.
For example, my response to a recent LinkedIn message from the national charity Spotlight YOPD, representing those with Young Onset Parkinson’s, saw CEO Gaynor Edwards pop in for a socially distanced cuppa. She brought fellow YOPDer and former neuroscientist Dr Jon Stamford with her.
Therefore, since I am always keen to talk to the best brains in the sector I was happy to host – they brought cake to make the meeting all the sweeter. Rapidly, I discovered that young ‘strokies’ and young ‘Parkies’ have a lot in common – the conversation was easy and animated.
In both cases we were living with conditions more commonly associated with the elderly than those in midlife – as the three of us are.
Sitting round the kitchen table we all had hope – and a belief that as advocates for our conditions we could and would make a difference. As the generation of personal computers and mobile phones, we will probably be using AI to make some of that difference. Three smartphones sat alongside the mugs of tea and cake plates on the table.
Health technology apps like Neuro ProActive in the hands of the right people – those impacted neurologically – is a potential game changer.
I was fascinated to hear from them about how much they feel an affinity with young stroke survivors, like me.
Three reasons for affinity between stroke survivors and YOPD
1. We defy expectations
Most importantly, both groups, ‘Strokies’ and ‘Parkies’ face a shared challenge in that our conditions are popularly associated with elderly patients not mid-life people, like us.
2. Digitally capable
Thanks to our relative youthfulness, we are a tech savvy patient community and have the confidence to ask questions and demand attention from medics and peers.
Both our charities, West Kent Different Strokes Peer Support Group and Spotlight YOPD are so excited about the roll-out of Neuro ProActive nationally and internationally. We both support cohorts of young patients who will welcome the opportunity to have some agency in their treatment programme by being empowered to self-manage their condition digitally.
3. Multi-disciplinary teams
Despite the clear difference between stroke rehab’s management of rehabilitation and YOPD’s need to manage its degenerative symptoms, both groups share the need of input from a range of AHPs.
Access to neuroproactive.com will give us an easy platform to reach those practitioners with whom we will be able to communicate, record progress and set goals in one place.
The identification of these three similarities between stroke survivors and YOPD reminded me of this quotation from Shakespeare: “Misery acquaints a man with strange bed-fellows”.( Tempest Act 2, scene ii).
Neither group feels miserable. By contrast, we feel excited. We are happy to promote the possibilities for improved care for our conditions in future.
I have discovered a new empathy for those who are diagnosed with Young Onset Parkinson’s Disease, and those who remain undiagnosed. It is significant that reliable data is hard to find for this condition.
Delighted to announce that, following a public tender, @NeuroProActive will be adopted by the South Wales Trauma Network. This will involve integration with EPRs and an independent research study on 500+ patients funded by The World Economic Forum.
Value Based Healthcare Wales. Likewise the news of its adoption by Leeds Children’s Hospital.
More patients and data will deliver better outcomes for all neurological conditions, which like Shakespeare’s themes can apply to any age. Strokies and Parkies feel old and young simultaneously.
Therefore, we feel like time-travellers.
You can get your own glimpse of the future by visiting www.NeuroProActive.com
And follow @neuroproactive on Twitter for the latest news.
Dementia care – how to use storyboards
Dementia Carers Count look at how this valuable creative tool can be used at home
Do you know that people living with dementia often process visual stories and information better than verbal communication?
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships. Visual aids such as storyboards can help maintain mental wellbeing for both the person with dementia and for the carer.
Sue Hinds, head of services at Dementia Carers Count, takes us through a range of techniques that carers can adopt (or adapt).
When and why visual support might be useful
There may be times when you need to support a person with dementia in attending events which are important to them. This might include appointments with the GP or other services, family events, shopping excursions, planning a trip and opportunities to engage in hobbies and pastimes.
We know that people with dementia often have challenges in both understanding information provided to them and/or retaining the information for long enough for it to be meaningful.
Carers tell us that a range of situations and emotions can arise. This could include the person with dementia refusing to go because they genuinely believe they were never told about it. Anxiety about where they are going, confusion, disorientation, agitation, distress, tearfulness, a sense of unease, and many more emotions can all emerge.
These situations can also provoke a range of emotions for you as a carer including stress, worry, fear, frustration, and anger.
Things we know:
- Providing information in bitesize chunks can help a person with dementia.
- Providing visual reminders can help.
- Visual information is often better understood than verbal information.
- Visual information can be referred back too, spoken descriptions (unless recorded are fleeting).
- Step-by-step instructions help.
- Visual formats can help a person express their concerns more clearly.
What are story boards?
Storyboards are one way to help support a person to understand, remember and engage fully with a meaningful visit, event or routine either inside or outside the home. They can capture key elements and stages of an event with images which can help the person to understand the event and will help to describe the actions at each stage.
By creating a storyboard, it can help you to identify all the stages and can help you think about what situations might arise, and can support a person with dementia to express areas which give them concerns.
Often storyboards can then be adapted or used again for other events.
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships, and a storyboard can help maintain mental well being for both the person with dementia and the carer.
They provide a way to cope, help to maintain relationships and provide a new way of coping with challenges – providing a new way of thinking, behaving and interacting together even when things are tough.
How to create a storyboard
Generally, a story board can look how you want it to look, but they should not have too much information on a page as this can be overwhelming.
You may wish to create a storyboard on one page, or a storybook where you flick from one page to the next, or even a storymat where you can add, remove drop things down into a ‘we are here now’ section.
Follow the steps:
Think about the task e.g. Going to the doctors, and then think of all the steps which will happen (this is unique to your own routine):
- We need to get up and out of bed at 8am
- We will go downstairs
- We will have breakfast
- We will go to the bathroom and have a wash
- Clean teeth
- Get dressed
- Go to the car
- Travel to the surgery
- Wait in the waiting room
- Go in to see the doctor and talk to the doctor
- Say goodbye and leave the surgery
- Get back in the car and drive home
- Arrive home
- Sit down in the kitchen for a cup of tea and a cake
Ideas of things you can use to help you
There are lots of symbols and resources which you can purchase to help with this, but a good tip is to also take photos within your own home and when you are out and about with the people and places you visit. This will help you to tell the story with as many familiar pictures as possible.
It’s also often worth taking photos during a familiar event so these can be used in the future. However, if you need some symbols there are various sites you can purchase them from and I have listed a couple below.
The creative visual aids website also gives a wonderful explanation of how visual aids can be used to support children, but the principles are exactly the same. The video below talks about the use of storyboards with children and I am currently in discussion with Gina regarding storyboards for people with dementia.
Talking Mats is another incredibly useful resource for supporting conversations, with videos and case studies of how visual aids can help a person with dementia in conversation and day to day life.
Good luck creating one, and have fun – we would love to hear from you with photos, descriptions and stories of how and when you use them. Perhaps you could also inform other carers through our forum: Virtual Carers Centre | Dementia Carers Count
Supporting mental and physical needs in complex dementia
St Andrew’s Healthcare look at the importance of meeting the needs of this client group
In supporting the mental and physical healthcare needs of people living with complex dementia, specialist expert support is vital to achieving the best possible quality of life.
St Andrew’s Healthcare is renowned for its work in this area and for its support of people and their families. Based within its Northampton site, the St Andrew’s neuropsychiatry service supports people with the most complex neuropsychiatric needs.
The service extends across Kemsley, the hospital’s brain injury unit, which has pioneered specialist neurobehavioural care since it opened over 40 years ago, and Lowther dementia hub, a bespoke environment opened in 2020 that is designed to meet the needs of people living with complex dementia and other progressive neurological conditions.
Working with older people within a neuropsychiatric service requires a range of specialisms. Here, we meet two of the multi-disciplinary team at St Andrew’s as they explain the importance of meeting the mental health, but also the physical health, needs of this particular patient cohort.
Muthusamy Natarajan, consultant forensic psychiatrist
My name is Muthusamy Natarajan, I’m a consultant forensic psychiatrist and also clinical director for the neuropsychiatry service at St Andrew’s Healthcare.
How do you approach the care and support of older people in a neuropsychiatric service?
It’s important when working with and supporting older adults with mental health problems to consider how their organic and functional illnesses intertwine and how we progress them in their pathway at St Andrew’s and onward into the community. Connections with the patient’s family are also key so we also need to make sure we work to maintain those links whilst offering support to family members too.
We have a lot of our patients who are living with dementia and obviously communication with those who are caring for them is a tricky challenge sometimes and making sure that their voices are heard. We have multiple methods do that including our advocacy services, but also our staff are really experienced and skilled in making sure that the patient’s voice is heard.
How do we support people living with dementia and complex needs?
In 2020, we opened the Lowther village. The Lowther village was very much a critical part of our ability to deliver the best care for patients who are living with dementia and other complex progressive neurological conditions such as Huntington’s disease.
The dementia village concept comes from the Netherlands, where the key area of focus is making sure that patients are able to experience familiar activities throughout their journey with dementia and that they are able to link with the community, and that’s what we try to do. Our aim is to make sure that patients have the least possibility of feeling like they are in an inpatient setting and that includes people who are on Mental Health Act sections and Deprivation of Liberty Safeguards (DoLS).
What key interventions do you use when working with people living with dementia?
When somebody comes to us, we carry out a comprehensive multidisciplinary assessment that is the basis of their care and treatment.
An individual might require specific psychological therapies and that may include things like reminiscence therapy, individual sessions to look at what their actual cognitive impairment is meaning for them on a day to day basis and we will use tools such as life story work.
One of the key things we will look at when an individual comes to us is what activities and supports are going to help them through their journey, and that will include activities within the unit, but it also may include activities within our grounds and also further afield in the community.
The third intervention is obviously in terms of our medical support, and we have a full complement of doctors, a responsible clinician, a geriatrician who works alongside us and also our specialty doctors and the medical team who look at the treatments we’re offering and make sure that is the most holistic approach to that individual’s care.
Having worked across a number of organisations what do you think makes St Andrew’s different?
What makes St Andrew’s different is that the culture and the organisation are geared to deliver care to very complex patients who come to us. The challenge to us is that we need to be able to demonstrate we can meet the complex care needs of our patients and ensure their journey is delivered in the best possible way and that we maintain our links with the carers and family for that patient. St Andrew’s does that incredibly well, and it does it holistically and in some ways, effortlessly. So building on that is a key area I think within the neuropsychiatry division and also within the charity as a whole.
Parul Shah, consultant geriatrician
My name is Parul Shah, I’m a consultant geriatrician, and I joined the St Andrew’s neuropsychiatry multi-disciplinary team in February 2021.
As a consultant geriatrician, what is your role within the neuropsychiatry team at St Andrew’s?
My role as a consultant geriatrician within the team is to pick up on the subtleties of medical issues amongst our older adult cohort of patients and implement proactive management of their conditions so that patients don’t deteriorate any further with their physical health, reducing visits to acute hospitals and improving their safety whilst they are in our care here.
What are some of the key areas of focus for you with St Andrew’s neuropsychiatric service?
One of my key areas of focus is to improve the overall strategy for older people’s health within the neuropsychiatry service with a particular emphasis on identifying frailty. Older people are often living with multiple conditions, and as they physically decline people become frailer, if we identify this and are aware of increasing frailty we can put approaches into practice such as exercise programmes and lifestyle changes that may prevent people’s physical health deteriorating.
Sometimes our patients exhibit very advanced stages of frailty, and then we need to recognise that they may be approaching end of life and that maintaining their quality of life is of prime importance, rather than necessarily focusing on physical health care interventions.
So I think that’s one of my main aims; to provide comprehensive assessments to older patients and identify why they’re getting frailer. If there are no reversible factors we then need to think about how to make them more comfortable and make the right decisions for them in their best interest by involving them.
To find out more about the St Andrew’s neuropsychiatry service visit: Neuropsychiatry services » St Andrew’s Healthcare (stah.org)
The impact of stress on sleep
Dr David Lee at Sleep Unlimited offers advice on how to reduce stress and improve sleep
In response to acute stress, our body produces adrenaline, to help us with the fight or flight response.
When our body perceives there is an immediate threat to our lives, this activates our Sympathetic Nervous System (SNS) to increase our heart rate, respiratory rate, stop non-essential functions such as digestion and produce stress hormones.
During acute stress you may experience issues falling asleep and entering the restorative sleep stage as your body believes your life is in danger and so prevents you from entering a deep sleep in case you need to fight or flee during the night.
Once the threat has diminished the Parasympathetic Nervous System (PNS) is activated to lower our heart rate, respiratory rate and stop the production of stress hormones.
Evolutionarily this response was useful as we had to fight for survival if, for example, a bear was going to attack us. However, now our stressors tend to be due to relationships, financial stresses, or work-related stress. Things we are unable to run from, which can cause long term stress and SNS dominance.
Long term stress increases our cortisol production. Cortisol is normally at its highest peak in the morning to help us wake up, get out of bed, and have enough energy for the day. Levels of cortisol steadily decrease during the day, reaching its lowest point at around 10pm. This is so we are relaxed and able to fall asleep.
When cortisol levels are low, the PNS is activated during sleep, and we enter the restorative period of sleep. Cortisol levels start to slowly rise again at around 2am. If you are experiencing long-term stress, you may wake up at around 2am/3am as cortisol levels are already high.
To help reduce stress, you need to allow your body to feel safe. Here are some tips to help reduce stress and improve sleep:
- Stick to a good sleep routine but try to go to bed earlier rather than later. If we are constantly stressed the PNS system may only be dominant during times we are asleep. As PNS is only dominant until around 2am, going to bed around 10pm will provide you enough time to rest and restore.
- In times of acute stress, exercise is important, so we move our bodies as if we are acting upon the fight or flight response. However, in terms of long-term stress more restorative exercise, such as yoga, may be helpful as this activates our PNS. High-intensity exercise activates our SNS as it increases our heart rate and respiratory rate, so try to incorporate restorative exercises into your routine as well. Remember exercise outside in the morning is better as it increases melatonin production for release later in the day to help you fall asleep.
- Try deep belly breathing when you are feeling stressed to helps you to feel relaxed. When we are stressed, we tend to breathe short quick breaths from our chest instead of long deep breaths from our stomach.
- Allocate time during the day to write down your worries and your to-do list as this will prevent you from worrying about them as you try to fall asleep.
- Try to reduce caffeine intake. When we do not enter the restorative stage of sleep, we can wake up feeling unrefreshed and groggy, this can cause us to make a cup of coffee to increase our energy. However, caffeine also increases cortisol so try to reduce the amount of caffeine you consume, at least try to stop caffeine intake after lunchtime as this can increase difficulty in falling asleep. If you improve your sleep practices you are likely to feel refreshed in the morning, making it easier to reduce your caffeine intake.
- Avoiding screens and working in the 2 hours before bed allows us to wind down and help us to switch from SNS to PNS. If we engage in work or see something on social media that causes our stress levels to rise, then this may cause us difficulty falling asleep.
* Dr David Lee BSc PhD CertEd CPsychol AFBPsS CSci is clinical director at Sleep Unlimited
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