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Brain injury in the new normal: How to keep in touch with loved ones during the pandemic

Consultant clinical neuropsychologist Dr Keith G Jenkins and Dr Jenny Brooks, consultant clinical psychologist on how to stay social during the pandemic.

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While they’re in everyone’s best interests, COVID-19 restrictions have made life more difficult for some.

One area people are struggling with is the social isolation of not being able to visit loved ones, or socialise with anyone other than the other members of their household, if they have any.

Despite the many ways to stay in touch with family and friends – including letters, telephone and video calls and conferencing –  people may still feel lonely and isolated.

To help manage these feelings, it is worth scheduling regular days and times to have contact with specific family and friends and spreading these throughout the week. You could even ask your family and friends to make you video messages, which you could replay at any time.

Ensure, where possible, that you have time to socialise in your day, every day. Schedule a phone or video call, or ask others to organise a group chat with family, friends or colleagues.

If you have a day where you don’t have a scheduled call with friends or family, it may be helpful to use this day to go out and do your shopping or take a walk in your community if you are able to.

It may be helpful to consider what aspects of normal routine can be kept the same, modified, changed or replaced. In terms of modifying activities, it may be helpful to ask yourself questions such as could a regular meetup with someone now become a phone call? Could the pub quiz night now be a on a video call? Could a trip to a cafe or a restaurant now become a takeaway?

And for those people in residential settings and maybe having to isolate in their bedrooms, could interaction with others or groups take place in the corridor, allowing people to safely socially distance in their doorways?

It may be that some activities you enjoy can not be modified. Therefore, perhaps you could think about what it was about the activity that made it enjoyable and meaningful and consider what other activity could meet these needs.

For example, did you enjoy going for a swim at the leisure centre because it was a physical activity or because it was relaxing? Or perhaps you enjoyed the social element of it?

It’s important to remember that just because you can’t see your usual support circle, this doesn’t mean they’re not there, or that they’re any less contactable, during the pandemic.

This is one of five blogs in a series on living in the new ‘normal’ with a brain injury, based on a webinar produced for ABI London (ABIL). See below for links to all other articles in the series. Dr Keith G Jenkins is consultant clinical neuropsychologist at St Andrew’s Healthcare and chair of Headway East Northants. Dr Jenny Brooks is a consultant clinical psychologist working independently and a director of The ABI Team.

For any questions about this topic email update@standrew.co.uk.

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Dementia

Seven devices that are revolutionising dementia care

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dementia technology
From remote monitoring to GPS tracking, technology can help put family worries at ease when caring for someone with dementia

Technology in the care system has come a long way, with the COVID-19 pandemic highlighting the need for more remote assistive technology.

Although there is no cure for degenerative diseases like dementia, utilising technology can ease the burden on both carers and patients, particularly those living on their own.

A 2020 study from the University of Oxford found that 100 per cent of carers involved said they or their patients benefited from assistive technology.

With this in mind, NR Times takes a closer look at seven devices which are enabling greater independence and life quality for people with dementia.

SmartSole GPS tracker

One concern for families when their relatives with dementia live on their own is the fear that they will leave the house and get lost.

Research suggests this is quite a common problem, with an estimated 40,000 dementia patients going missing for the first time each year.

This is where the SmartSole GPS tracker can come in.

The product uses cellular technology to send its location every five minutes so relatives and carers can locate those living with dementia.

What makes the SmartSole unique is its discreteness. It fits into almost every shoe, so if someone does go missing, those with access to the monitoring system will be alerted straight away.

The Simple Music Player

Music can have a profound effect on people with neurological conditions. Being able to use the technology that provides this, however, can be difficult for those with dementia.

The Simple Music Player is a recommended product from the Alzheimer’s society and it makes listening to music straightforward.

Styled like a traditional radio – which is instantly recognisable for the elderly – the device is easy to use. Simply lift the lid and music will begin to play.

DayClox

Also keeping things simple is the DayClox which makes timekeeping easy and understandable for dementia patients.

Available in both traditional and digital forms, the clock simply shows what day it is and whether it is morning, afternoon, evening or night.

Working out specific times can be a challenge for those with dementia, so the DayClox can assist when it comes to things like keeping track of when someone needs to take their medication.

CaringBridge App

Although not specifically designed for dementia patients, CaringBridge is a free platform that allows everyone involved in caring for an individual to keep up-to-date with their progress.

It gives carers the chance to set up a personal webpage for a patient, which they can post photo and video updates about how they are progressing.

Other people can visit the page, where they can like (called Well Wishes) and comment on the updates, as well as reading their personal story and journal updates.

The Extra Simple Dementia Mobile Phone – Doro 580

The Extra Simple Dementia Mobile Phone, by tech giants Doro, takes away any complication around giving a loved one a phone call.

If the last year has taught us anything, it’s the importance of keeping in touch with loved ones; and some studies suggest that loneliness can speed up the onset of dementia.

With its easy-to-use set up and large buttons, the Dementia Mobile Phone makes calls seamless. Simply link a phone number to each button and press to begin.

Canary Care

Looking for an all-in-one monitoring system? The Canary Care portal is a discrete, wifi-free system that tracks a person’s behaviour without the use of cameras or microphones.

Not only can it follow a person’s movements, bathroom visits and sleeping patterns, it also allows caregivers to track their home’s temperature, sending alerts if anything looks unusual.

Care can be shared around the family through the portal and reminders can be set to check that the proper medication is being taken.

Howz

Howz is similar to Canary Care as it allows those in charge of care to keep track of a person’s activity, notifying them if anything unexpected occurs.

Funded by NHSX, the system is unique as it can connect to a Smart Meter to monitor the electricity output in a person’s home.

This means it can detect any sustained electrical activity, which can help dementia patients in the event they forget to turn off their appliances.

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Building confidence and learning new skills – how vocational work supports rehab

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St Andrew's

“Being at Workbridge gives the person a sense of purpose. It provides them with an aim to achieve. They can stand back and be proud of what they’ve done,” says Tom, a service user accessing Workbridge at St Andrew’s. 

Based within the St Andrew’s Northampton hospital site, and integrating public facing retail offerings, Workbridge provides a vocational pathway for people living with brain injuries, mental illness, learning disabilities or autism. 

The centre operates to provide training and social opportunities for people living in the community and within the inpatient setting of St Andrew’s and here people can learn new skills through the array of activities on offer, supported by vocational skills instructors. 

Departments ranging from ceramics to woodwork, horticulture to catering, allow service users to learn both life and work skills, building confidence and social capability in the process.

The products made in the workshop sessions are sold in the public-facing garden centre, charity and coffee shop where service users can also work, meeting the public and learning retail skills.

Workbridge has helped hundreds of people to gain or regain skills and build their confidence and independence over the 41 years since it was established. 

Tom, who accesses the centre as a community based service user is a regular and an enthusiastic advocate of the service. 

“I’m sure everyone benefits from being here, but that’s quite subjective and down to the individual, but for me the consistency it gives me has been really important,” he says. 

Having sustained two brain injuries – the first in 2001 as the result of an assault and another in 2008 while cycling – Tom is now rebuilding his life with the support of Workbridge, where he attends textiles sessions and volunteers in the charity shop. 

“I know I need structure as a result of my head injury and Workbridge gives that. It is an incredible community and there is a real family vibe. It has also helped with my patience… Ive developed more patience over the years. This is a non-intrusive environment but friendly and that has helped.”

For Neelam too – a young mother who needs ongoing care and who is currently a patient in St Andrew’s Brain Injury services after a tumour on her pituitary gland left her with a range of needs – her participation in ceramics sessions at Workbridge are an important aspect of her recovery. 

“In ceramics, at first they had a jar already made and to start with I just had to clean and tidy it up. But slowly they gave me more jobs and responsibilities because I was capable,” she says. 

“Now, I feel I am confident in meeting new people. I am working and have an important job to do and I feel more responsible; because what I am making is going to be sold to the public I have to be really careful. I try to give 100 per cent with any painting or modelling, I go there and I always try my best.”

For both Tom and Neelam, their positive experiences at Workbridge mean they now hope that one day they can find paid employment.

“Before my brain surgery, I was working in a multi-national company as a quality assurance officer. However, after my surgery, I was literally doing nothing and was just in hospital,” says Neelam.

“Now I feel my life has totally changed. I have hope that I can work again.”

Tom continues: “I need an employer with good understanding of head injury and my strengths and weaknesses. I think Workbridge would be an incredible employer for that and I could be a pathway example for other service users. 

“I am quite engaged and sociable so would love to be a service users’ representative and a voice for other people.” 

For the multi-disciplinary team that support patients on St Andrew’s brain injury wards and the vocational skills instructors based at Workbridge who work with service users from the community and hospital patients, they see first-hand the significant benefits that vocational opportunities bring.

“Everyone has different levels and abilities and things they are able to progress towards, but Workbridge offers opportunities for everyone. It’s an amazing example of what our service can provide,” says Gemma Thornton, an occupational therapist in the St Andrew’s Brain Injury service who works closely in supporting Neelam. 

“With Neelam, she is a very creative person, and I know she puts a great deal of effort into making something which will go on sale, in her mind it has to be perfect. 

“She has made some great progress with her skills and confidence through ceramics, in addition to the excellent progress we’ve made with her moods and frustration in our wider therapy work. 

Louise, a senior vocational skills instructor who works closely with Tom, adds: “Tom really enjoys the structure of attending Workbridge as he feels it gives him a purpose for the day. He’s given most things a try from upcycling, making bags for the mors bag project – morsbags.com –  to sanding and painting. All of these projects help with fine motor skills and Tom is certainly an asset within the department.”

Incorporating work back into their lives following their brain injury has certainly been an important part of Tom and Naleem’s recovery. 

As Tom says: “Vocational activities provide an individual with more meaning in their life, that distract from more troubling elements they may be living with, and they will also provide transferable skills which people can deploy in other areas of their life.”

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Dementia

Student creates innovative memory box to help dementia patients

Our senses can help trigger certain memories which are vital to keeping those with dementia connected, with one student from Edinburgh creating a tool to do just that.

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Dementia patients

A student from the Edinburgh Napier University has created a reminiscence therapy tool kit which is designed to help dementia patients recall past memories.

The Forget Me Not Box contains a number of tools that are used to activate the five senses, bringing joy to those with dementia while also helping retain their identity.

The kit is fully customisable so patients can explore memories and senses that are unique to them.

Its lid allows photographs to be displayed while the built-in speaker can play a patient’s favourite songs as well as voice notes from family and friends.

The box’s taste cards come with photographs and descriptions of a person’s favourite foods, while the scent bottles allow them to recall familiar smells such as similar perfumes.

All of this keeps a dementia patient’s identity, something which can often be lost particularly in a care home setting.

Furthermore it can be used to improve communication between family members, acting as a conversation starter when people come to visit.

Christy Orr is in the final year of her graphic design degree and created the box as part of her major project after her family’s past experiences with the disease.

“My grandma passed away from Alzheimer’s when I was younger so that’s kind of what motivated me to do the project,” Christy told NR Times. “She was diagnosed when I was quite young, but I do remember the whole diagnosis process.

“That was one of my earliest memories of her. I was there throughout all her dealings with Alzheimer’s until she passed away.”

“The box is mostly about identity and the fact that you still are that person even when you are diagnosed with dementia.”

Christy completed her dissertation around the causes of dementia worry and one of her main findings was this loss of identity among these patients.

This is what the Forget Me Not Box is aiming to do and has already shown its impact, having been tested on people at various stages of dementia.

She has been assisted by both CogniHealth and the Dementia Forward charity with the project, who are looking to help her take the product to market.

“I’ve got the business limited at the moment,” Christy said. “I just need to sit down and think about how the box will actually be made, because currently it’s being made as a prototype out of the things that I had available at the time.

“It’s been sent out for testing and I’ve had some user feedback so far. I was sent some photos from a woman whose mum has dementia and she is in a care home.

“She gave her the box and put her own music in the sound module and some scents in the smell bottles, but she was most interested in the taste cards I created.

“It’s got different food and drinks or anything that you can taste on them, with a little description so it’s usually interesting reading them for those with dementia.”

Christy has also had a lot of help from Edinburgh Napier University, who think the box is a great idea.

“The university has been really supportive,” she said. “I haven’t actually received feedback or got my grade for my major projects yet but it’s been really good so far.

“They created a video about the box and posted it on social media to get the word out about it and they’re excited that I want to continue it on as well, more than just a project.

“I do want to get it to market because I think it’s a thing that could really help people.”

Although the Forget Me Not Box is still in the trial stages Christy wants to start distributing it as soon as possible to show its power.

Not only is the device helping those with dementia but it is also educating others around what it is to live with the condition, showing people that it is possible to live happy with a diagnosis.

“I think the box itself raises awareness that you don’t lose yourself to dementia and that you can still talk to that person that you know with the condition.

“Whether it be you grandma, a family member or a friend they are still the person that they are and the box enforces that.”

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