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‘It’s a privilege to support older people with dementia’

Sarah Hayes, a lead occupational therapist at St Andrew’s Healthcare, discusses the uniqueness in working with the older age group

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Sarah Hayes, a lead occupational therapist within the neuropsychiatry service at St Andrew’s Healthcare, works across brain injury, dementia and Huntington’s disease. Here, she shares her experience of working with older people living with dementia and the privilege she feels in being able to support them

What are the challenges and complexities of working with older people?

There’s a wonderful poem out there called the ‘Crabbit Old Woman’ which is written by an older lady who is in hospital, and it enables us as health professionals to remember what is important about an individual; the fact that she has this whole life before we met her, that she was once a child, she has a family, she had a husband and she’s had grandchildren, and there she is at the end of her days requiring full care for her complete self. 

And I think the challenge that we have is to remember this person beneath the physical and mental health and the cognitive impairment, to get to know who this person is underneath. It’s the sense of ‘personhood’ that is often referred to by Kitwood and his person-centred care model for dementia patients, and recognising that we need to get into the individual’s world. 

The difficulty we have is when you have the cognitive and the communication impairment, getting in and understanding that person’s world is the challenge. The complexities start with understanding the individual, but as we get older we know that our bodies become less robust from a physical perspective, and there are lots of barriers that our bodies give us to stop us from doing what it is that we want to do. 

So as an occupational therapist, we are the ones that prescribe equipment for everyday living, ensuring, for example, that the beds that our patients have are correct and can suit their needs. If they need a wheelchair, that the wheelchair supports their posture; if their posture is correct they will be more able to sit and enjoy a meal. They will then be more able to sit and interact with the world around them.

The specialist Lowther dementia hub at St Andrew’s

The other element relates to understanding the sensory world in which our patients are living. So some people, as we know, like to be stimulated by what’s going on around them, but some require a quieter environment.

It’s up to us to be able to understand that; whereas younger people can grow and adapt, those who are older are less able to adapt. So we need to understand the core of that particular individual’s sensory information and how they process it, and then provide the environment that most suits their ability.

What do you routinely face among this client group and how do you need to support them?

I think the best way for me to describe it is to take a morning routine as an example. For most of us, we are able to get ourselves up out of bed, into the shower and have our breakfast without any particular thought.

Many of us probably also have children and pets to look after which also forms part of the routine and what we consider to be very simple occupations, but for a person with dementia that morning routine can be complete chaos for them right from the word go.

The ability to be able to get up, to be able to make that transfer from lying to sitting and then from sitting to standing to get out of bed is something that requires a lot of planning, as well as the physical ability to be able to do that.

One of the key interventions we do as occupational therapists is at first we take a little bit of a step back, because we want to understand what that base of the individual’s performance is. We don’t want to go and fix whatever is being done independently and we want to be able to promote the autonomy that they have already got. 

We need to make a decision; what is the most important thing for this individual? Where do they maybe want to focus their energy? We will work with the individual, and family commitment is very important here.

As an occupational therapist how do you overcome the complexities presented by working with older people with dementia?

We always try to build strong relationships with families, which is important. As an occupational therapist I would use activity and occupation as a means to enable us to get to know the person. 

One of the key elements that is so powerful for us to use is community leave; being able to take somebody even to our own café here and to sit down and to pass the time of day, by doing something like that we often find that conversation flows a lot more than if you are on the ward with them.

By going out into the world, they can feel they have a voice, they can experience what it’s like to be an individual, to be a citizen within our community once again. As occupational therapists we will ensure we make that a success by carefully organising and planning all aspects of that trip.

I think at St Andrew’s what’s key to the way that we care for older adults is the ability that we have to work together in multidisciplinary teams. Each team member has their own unique set of skills to support the care of that particular individual. 

So for example, we know that physiotherapy can play a really key part in maintaining function by doing stretches, promoting mobility, reducing the falls risk. If we are able to promote physical wellbeing, then we are more able to then work with the cognitive deficits that somebody has. 

The whole team works together to play their individual role, and once we have grown that understanding of an individual through our occupational analysis, we would then spend a lot of time working with our nursing staff to say; ‘This is this is the right way to work with this particular individual’. If we can do it that way, then we know that their wellbeing is going to be enhanced.

What is the most rewarding part of your role?

You could have somebody who, for example, may be unable to maintain their sitting posture, that means that they slump down and slowly, bit by bit, their ability to interact with the world around them is greatly disabled. When you have swallowing difficulties as well you need to have that strong and upright posture to be able to eat safely and with enjoyment.

There is nothing more satisfying than using our knowledge as occupational therapists to plan what the individual needs to be able to interact with the world; to be measured up and to be fitted for a wheelchair that completely supports their posture, whether it be through their lower body, whether it be through their upper body and their arms. You get them sitting in that wheelchair, you get them sitting at a table, and their faces and their whole demeanour change because they can sit at a table and they can enjoy a meal or they can enjoy watching television. 

I think that’s where the greatest joy comes, in how we can use equipment to be able to promote how somebody interacts with the world around them.

How is working with older adults as an OT different to working with other patient groups?

There is a uniqueness about working with older adults. As we grow, as we as we get older, our bodies don’t work as well as they used to, our minds sometimes don’t work as well as they used to, so occupational therapy in many ways relates to looking at a person’s ability to learn how to adapt.

So what we need to do, particularly when we’re working with those with degenerative conditions such as dementia, is to look at promoting or sustaining their level of ability for as long as possible, and we do that by compensating; we look at how we can compensate for the way that the body and the mind are maybe going in a different direction, and that is why prescribing equipment for everyday living is so important.

We look at the environment around them and see how we can change that, rather than by looking to change the individual.

What makes St Andrews a great place to work?

We are so privileged to work with our patients, who come from all over the country, they come from all different backgrounds. 

The vast majority of the patients we work with have had some really, really tough lives. They’ve had some really very, very difficult things happen to them, and there’s me as an occupational therapist being given the privilege to be able to work with them. 

To be able to understand what is most important to them and to be able to make it happen for them is really special. So that’s why St Andrew’s is very special to me. 

And in addition to your working life, can you tell us something else about yourself that your colleagues may not know?

Many a year ago, I was challenged by my cousin to do the Great North Run.

I do not run. I never have and never did. And I have not done since. But because it was a challenge and I went through the whole process, somehow or another, I was able to run 13 and a half miles to complete the Great North Run.

And that is it for me. Never again. But we did it. We were raising money for a children’s charity for wheelchairs, and I’m very proud we could support that. 

To meet more of the St Andrew’s team visit www.stah.org/older-adult

Insight

Dementia care – how to use storyboards

Dementia Carers Count look at how this valuable creative tool can be used at home

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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?

Image of a storyboard example to use with someone with dementia

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):

For example:

  • 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

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Supporting mental and physical needs in complex dementia

St Andrew’s Healthcare look at the importance of meeting the needs of this client group

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Designed to recreate the feel of a village environment with a post office, pillar box, village hall, bandstand and bus stop, Lowther’s outside space helps to maintain familiar routines, encourage activities and provide essential distractions and engagement

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)

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Brain injury

Pioneering project could revolutionise capacity assessment

Sector-leading research is set to generate a framework of wellbeing indicators for patients

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Specialist neurological care provider PJ Care has partnered with the University of Leicester for a sector-leading research project that could revolutionise the assessment and care of residents who lack capacity.

The two have come together in a knowledge transfer partnership (KTP) to support the creation of a centralised system at PJ Care to create algorithms that will generate a framework of wellbeing indicators for those who are non-verbal as a result of their neurological condition.

So far, a review has been completed of existing research into this area, which will be published jointly by PJ Care and the University of Leicester later this year.

Leading the project is Dr Allan Perry, consultant clinical neuropsychologist and director of clinical services at fast-growing PJ Care.

“The current models for assessing the health and wellbeing of those without capacity and who cannot readily communicate their feelings and experiences are limited and don’t take advantage of the recent advances in technology and data analysis that can give us much more detailed information,” he explains.

“There is a wealth of monitoring technology that we use which allows us to collect real-time data on a number of wellbeing indicators such as a person’s oxygen levels, heart rate, fluid intake and the number of steps they take to reach a certain distance.

“We believe this data can be analysed by an algorithm to provide insights into personal wellbeing, sense of agency, independence and self-determination, that are more accurate than those offered by traditional methods. We can then apply this information to tailor our care to that individual.

“While there is plenty of information on bringing more technology into the care sector and using the data being created by it, this isn’t being married with the questions posed by a person’s capacity as yet. We don’t believe any other care provider is delivering anything like what we are proposing to.”

PJ Care is a specialist neurological care provider with three specialist care centres – the first of which has just celebrated its 21st anniversary – for more than 200 adults with progressive conditions such as young onset dementia and Huntington’s disease, and care and rehabilitation for people with acquired brain injuries.

Dr Zehra Turel holds a PhD in cognitive neuroscience from the University of Leicester and serves as KTP research associate for the project, working with Professor John Maltby and Professor Elizabeta Mukaetova-Ladinska of Leicester’s Department of Neuroscience, Psychology and Behaviour.  

She says there is an urgent need for an accurate assessment tool for those who have difficulty communicating.

“We have so far uncovered that the available wellbeing measurements neglect or fail in understanding of the clinical populations such as cognitively impaired individuals, with or without capacity,” says Dr Turel.  

“This project will provide micro and macro insights about residents’ health and wellbeing, and support decision-making at both resident and business level.

“With the increasing use of new data-driven technologies and streamlined data collection at PJ Care, this project will improve personalised care and provide more accurate and faster predictive and preventive measures, and more informed decision-making along with lowering costs and simplifying internal operations.”

“This KTP has the potential to develop resources that could not just be transformative for PJ Care and how our staff support people without capacity, but, eventually, for the whole care sector,” says Dr Perry.  

“We will be looking to market this if it proves to be as effective as we believe it will be.”

 

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