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Dementia

Social isolation linked to dementia

Researchers call for loneliness to be tackled in society after link established

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Social isolation is directly linked with changes in the brain structures associated with memory, making it a clear risk factor for dementia, new research has revealed.

Setting out to investigate how social isolation and loneliness were related to later dementia, researchers at the University of Warwick, University of Cambridge and Fudan University used neuroimaging data from more than 30,000 participants in the UK Biobank data set. 

Socially isolated individuals were found to have lower grey matter volumes of brain regions involved in memory and learning.

Based on data from the UK Biobank, the researchers used modelling techniques to investigate the relative associations of social isolation and loneliness with incident all-cause dementia. 

After adjusting for various risk factors (including socio-economic factors, chronic illness, lifestyle, depression and APOE genotype), socially isolated individuals were shown to have a 26 per cent increased likelihood of developing dementia.

Loneliness – the impact of which has recently been investigated in both brain injury and stroke survivors, but has become significantly more prevalent in the general population during the COVID-19 pandemic – was also associated with later dementia, but that association was not significant after adjusting for depression, which explained 75 per cent of the relationship between loneliness and dementia. 

Therefore, relative to the subjective feeling of loneliness, objective social isolation is an independent risk factor for later dementia. 

Further subgroup analysis showed that the effect was prominent in those over 60 years old.

Dementia Carers Count

Professor Edmund Rolls, neuroscientist from the University of Warwick Department of Computer Science, said: “There is a difference between social isolation, which is an objective state of low social connections, and loneliness, which is subjectively perceived social isolation.

“Both have risks to health but, using the extensive multi-modal data set from the UK Biobank, and working in a multidisciplinary way linking computational sciences and neuroscience, we have been able to show that it is social isolation, rather than the feeling of loneliness, which is an independent risk factor for later dementia. This means it can be used as a predictor or biomarker for dementia in the UK.

“With the growing prevalence of social isolation and loneliness over the past decades, this has been a serious yet under-appreciated public health problem.

“Now, in the shadow of the COVID-19 pandemic there are implications for social relationship interventions and care – particularly in the older population.”

Professor Jianfeng Feng, from the University of Warwick Department of Computer Science, said: “We highlight the importance of an environmental method of reducing risk of dementia in older adults through ensuring that they are not socially isolated. 

“During any future pandemic lockdowns, it is important that individuals, especially older adults, do not experience social isolation.”

Professor Barbara J Sahakian, of the University of Cambridge Department of Psychiatry, said: “Now that we know the risk to brain health and dementia of social isolation, it is important that the government and communities take action to ensure that older individuals have communication and interactions with others on a regular basis.”

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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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Dementia

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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News

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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