Tag: carer

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There is always someone behind Dementia

Dementia

The following is an extract from ‘The Dementia Whisperer’ by Agnes B. Juhasz, which looks at the importance of a ‘person-centred’ approach in dementia care and how to understand the person hidden behind the condition of dementia.

There is a personality in every single human being, an absolutely unique code and pattern built up over a lifetime, and the way to understanding the person hidden behind the condition of dementia must not be blocked by obstacles such as language differences, communication problems, short-term memory loss or other physical and mental causes. This is the fundamental aim of the person-centred
care model I have always used – to help overcome these obstacles while finding out what the person with dementia really needs and what he or she really want. That is why the person must be taken into account first, before the disease.

I cannot emphasise too strongly the importance of the person-centred approach in dementia care. Taking each affected person as an individual, carers must start to learn their life history, habits, hobbies, fears, things they are proud of and all the tiny elements that make them happy or sad. They must get to know the subjective world of dementia, the world of the forever ‘I don’t know’. Carers must try to make contact with the personality that is hidden behind the barricades and search for an indirect connection while constantly checking on the physical needs of each person in their care, ensuring their comfort and doing their best to make them feel at home and safe. It is not good enough only to hear what people with dementia say; carers must let the words reach their innermost minds, if not their souls, if they really want to understand what dementia sufferers are trying to communicate.

Efforts to make a connection with a person with this condition will be much more effective if these guiding principles are kept in mind. In this way, carers can build up a kind of ‘special manual’ that quickly provides the answers to questions about the whys of seemingly odd or
annoying behaviour patterns.

If somebody desperately wants to go ‘home’, insisting that where they are is not the place where they belong, such behaviour can be
understood as communicating the fact that they do not feel safe or comfortable at that moment for a variety of reasons, and that they want
to go somewhere where they will feel reassured.

If the individual keeps saying they must go to work, even though they have been retired for years, it can mean they yearn to be useful and
busy again, and are feeling bored, worthless and useless.

If a person with dementia is looking for a wife or husband who died years earlier, it might highlight an individual’s lack of company and
need for emotional support.

Speaking this unique ‘language’ helps carers not only to understand different situations but means that they can also be the rock on which these people can rely and trust.

During my time working with Sylvia, I have noticed that it has become an involuntary habit of mine to speak to her more slowly and with more articulation than I usually do with other people. She speaks clearly and deliberately, perhaps because of her background in languages, and at first I think I copied her, which incidentally was very good for my English. Now, I believe that my speaking slowly has the added benefit of giving her the chance to think during the conversation and the time to find and select the right words to express as clearly as possible what she really means or wants to say. I also always take care to eliminate every possible barrier or extraneous noise from our verbal connection.

When Sylvia is watching TV, she usually has the volume up high because of her hearing impairment. Although she has got hearing aids, she prefers not to wear them at home, especially when she is watching television, as they make not only the speech but also the background noise far too loud. Naturally there are moments when she wants to say something during a Poirot or Miss Marple episode, and I always automatically turn the volume down immediately to get rid of a very disturbing communication barrier.

In verbal communication I have learnt never to switch topics quickly as people suffering from dementia are unable to follow quick changes of idea. If I have asked a question and I realise that Sylvia’s response has nothing to do with the question asked, or she says something totally incoherent, I try to rephrase what I have just asked or said, and that usually solves the problem.

[…]

Reminiscence therapy is a crucial part of dementia care work. This person-centred approach concentrates on the personal life history and
the most pleasant memories and occasions of the life of a person with the condition. Recalling personal experiences and skills that the person used to have, while showing a lot of love and interest, provides very strong support to the current mental state so that the mind can function at its maximum. If a person’s mental and emotional states are well balanced, they have a positive effect on the person’s physical health too.

‘The Dementia Whisperer’ by Agnes B. Juhasz is based around real-life stories and provides insights into what she has found works and does not work, and candidly reveals her own emotions of frustration, irritation and – sometimes – amusement, and how she has learnt to cope with these.

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Spreading the word about Carers

The following blog is by Sara Challice, award-winning author of ‘Who Cares? – How to care for yourself whilst caring for a loved one.’

Have you heard of Health and Wellbeing boards? No, I hadn’t either, until I was asked to be on one a few years ago to represent carers within my borough of Richmond.

There are 153 Health and Wellbeing boards across the country, and their purpose is to establish collaborative decision making, planning and commissioning across councils and the NHS, informed by the views of patients, people who use services and other partners.

At present, I believe I am the only one on one of these boards, but we need a Carer Representative on every board – to ensure carers are represented across the UK, and are considered and supported within the various upcoming papers and proposals. Because if there is a paper on residents living with long-term health conditions, you can guarantee there will be a carer behind the scenes supporting them – but carers can often still be overlooked.

Please do get in touch with your local council and ask your Health and Wellbeing board if they have a Carer Representative.

Supporting Working Carers

Did you know 600 working carers quit every day due to the insufficient support? And inadequate support for working carers costs UK businesses £8.2bn every year.

But there is a better way.

Businesses Virgin Media O2 and Sainsburys recognise carers in their workplace need support, and I give online sessions supporting staff caring for loved ones. Often given during lunchtime hours, these invaluable sessions allow space for carers to learn self care tips, insight and psychology to help them become more resilient and regain balance, whilst juggling work with caring. These sessions can also include their line manager, so there is a learned experience for all, creating a supportive collaboration within the workplace, allowing for better communication.

Sharing Learned Experiences

Have you heard of Caregivers Burnout, the Helper’s High or Compassion Fatigue?

This invaluable insight, and much more, is shared in my sessions to support those caring for loved ones. Whilst engaging carers, I share stories and tips to help improve their health and wellbeing, and each session focusses on a particular topic, helping them gain clarity on all that is happening to and around them, whilst they take back control and find ways to enjoy their lives again – guilt free.

Of recent, carers have been asking for a session on, ‘Preparing for life after caring,’ because often, we just never know when our caring role may suddenly come to an end.

What can carers expect, and what steps can they put in place now to safeguard their own needs for when this big life event occurs? In this particular session, I share my own experience during my transitions once my caring role had come to an end, and I share insight and strategies to help carers with their transition, creating resilience whilst boosting their own health & wellbeing.

“I so could have done with this information. It would have made life so much easier!” – says Sara

Finally, Sara is giving a keynote speech in London for Carers First, a charity supporting carers over a number of counties. In sharing insight and knowledge, the event brings together trustees, staff and volunteers to collaborate, celebrate and plan for the future.

“Sara has delivered many online sessions for Carers UK, and we were delighted when she ran a series of Wisdom to Empower sessions for us, which were some of our highest attended online meet ups of the year.  The sessions were highly valued by the carers, providing them with vital support during one of the most challenging times of their lives. Sara shared lots of tips and insight to help them gain the clarity to make positive changes in their lives and maintain wellbeing – not only for themselves, but for those they care for.” – Michael Shann, Head of Membership and Volunteering, Carers UK

Read the first chapter of ‘Who Cares?’ for free here and to get in touch with Sara to learn more about her engaging sessions for carers, please email sara@whocares4carers.com, or to learn more of her expert information, advice and support, transforming the lives of carers, go to www.whocares4carers.com

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Carers Week 2022

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contributions carers make to families and communities throughout the UK.
It also helps people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.
This Carers Week, Mary Jordan, author of ‘The Essential Carer’s Guide to Dementia’, details what being a carer to those with dementia means, and how people can lend them more support in their role.

Was there ever a more difficult time to be a carer? Especially a carer of someone with dementia.

Dementia is a very difficult condition to deal with. It is unpredictable. It is not an illness that has a set ‘pattern’, nor despite many texts to the contrary are there set ‘stages’ that the person with dementia goes through as their illness progresses.

The things that can help

A few things are known to be helpful: social stimulation, connections with close friends and relatives, access to good medical attention and support and advice, timely intervention when ‘crisis’ (such as falls, urinary tract infections, or accidents) occur.
All these have been denied to carers over the past two years.

How things changed.

A face to face meeting with the GP has become almost unknown. Appointments with a specialist are fraught with complications. Support services are discontinued. Outside visitors are not allowed during hospital stays. Friends cannot visit. Family members are denied access to residential care homes. Rehabilitation services are not functioning.

What carers are telling me

Rather surprisingly (to my mind) most carers are fairly accepting of the lack of face-to-face contact with GPs. After an initial period, most of them seem to have got to grips with technology enough to manage telephone, or remote contact via internet consultations. The biggest difficulty seems to be with access to ancillary services such as physiotherapy, rehabilitation, falls clinics, speech and language therapy and sight and hearing services. These cannot be delivered remotely and the ‘backlog’ after lockdown seems to have led to long waiting times for appointments and treatment.

Support Services in the community

Many carers rely on social support such as dementia cafes, memory clinics, ‘Singing for the mind’, seated exercise classes, Cognitive Stimulation Therapy, carers support groups. All these services were forced to close during the severe ‘lockdown’ period but it is noticeable that as soon as it was permitted and reasonably possible most of these services re-opened. Sometimes there were restrictions or extra guidelines, but the community and voluntary sector made efforts to provide these vitally needed services.

A wide variation in provision

Once government guidelines were relaxed it might have been expected that access to health services would be quickly brought back to pre-pandemic normality. But there seems to have been a wide variation in maintenance of restrictions and this has created problems for carers. One chain of ophthalmologists still insists on full PPE for staff, face coverings for customers and queuing outside the premises whilst another invites walk-in appointments. Some dentists still (strangely) insist on face coverings for patients whilst others follow government guidelines that these are no longer necessary.  Some physiotherapists and chiropractors do not allow anyone to wait on the premises, others have opened their waiting rooms.

Difficulties for people with dementia

Many people with dementia find difficulties in following social procedures such as standing in a queue, waiting in turn, facing a doctor or health practitioner alone (without the reassuring presence of a carer) wearing a face covering, or following a one-way system.  Whilst these procedures may have been necessary when the pandemic was at its height more thought needs to be given and action taken to end unnecessary restrictions now.
Often health and social care businesses are forced to continue to press unnatural restrictions on customers and clients due to the pressures exerted by those providing Professional Indemnity Insurance. This is wrong. If the Government has indicated that the situation has eased, then this should be definitive.
Life is hard enough for those caring for someone with dementia.  Does society need to make it even harder?

For more information about Mary Jordan’s book, ‘The Essential Carer’s Guide to Dementia’ or to read the first chapter free, click here.

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Ending lockdown for people with dementia and their carers

Blog post written by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’.

 

If lockdown has been hard for many people, then emerging from lockdown may cause its own problems! Many have been made so afraid of infection that they have refrained from taking steps back into society again even when this was allowed. I have clients who tell me that they have not left their home for over a year. Many are really afraid to visit their GP (even when they can get an appointment) or to go to the hospital for important outpatient appointments. Some have avoided dental checks or eyesight appointments.

Carers know instinctively that routine is good for those with dementia – they find it easier to cope when there is a set pattern to the day and more difficult to cope when their routine is upset. This past year has disrupted many lives. Routines of social interaction have been interrupted and disturbed. Familiar visitors have stopped visiting. Family have kept their distance. Even those of us who are able to understand the reasoning behind the disrupted routines have been disturbed and depressed – how much more difficult for those unable to understand what is happening?

I have found it quite disconcerting when people have told me that they have become ‘used to’ staying at home and are reluctant to go out and meet others because I know that meeting up with other people, talking, touching and mixing are very important for those with dementia. Perhaps it is easy to forget how vital such activities are for carers too.

The Cognitive Stimulation Therapy groups that I run have been able to continue (under Covid-secure guidelines) since September and people have been very grateful for this, but the Dementia Café has not been allowed to run and carers have told me that they really missed this facility. It seems that the simple chance to meet along with the person they are caring for, in an informal social setting was considered by many to be a lifeline.

Now, hopefully things are changing again and we can once more meet up with family, friends and supporters.  I feel it is important to embrace this new ‘opening up’ of society both for people with dementia and for their carers. But perhaps we should also take note of the fact that life can change suddenly and unexpectedly and that things can happen that are beyond our control. We cannot plan for every contingency but we can all remain open to considering change and accepting the need to adapt – and this is particularly true when caring for someone with dementia.

 

‘Solutions in Dementia’ by Mary Jordan (due in 2022) addresses the many occasions of dramatic change that can happen as dementia progresses and highlights some solutions that have been found helpful.

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Why Volunteer?

With both Volunteers Week and Carers Week this month, it is an important time to think about what we can do for others. Author of ‘Who Cares?’ and winner of The People’s Book Prize 2020/21 Best Achievement Award, Sara Challice, explains how you can offer help to others through volunteering and why it is important to get involved.

I think we are all aware of the countless volunteers who have rallied round to help during this last year’s pandemic. In giving just a little bit of time, we can make a huge difference for many.

I discovered our local charities and the great work they do, after my husband became disabled from a brain tumour. Although he was given six weeks of physiotherapy from our hospital once he came home, this service was stopped soon after and his file was closed. I was then left attempting to pick up a man twice my size from the floor as he continued to have falls and deteriorated further.

During this time, I was told of a charity called INS (Integrated Neurological Services). I had never heard of them – why would I? They were in our local area, and offered one-to-one physiotherapy plus more, and I would also receive support as a carer. We immediately registered with the charity and met a wonderful group of people, who helped support us both during our challenging times.

Had I not become involved with this charity and and the the great work they do, I wouldn’t have known about the difference they were making in others’ lives. I became a trustee for them and discovered that there were times they were financially hand-to-mouth. You would naturally presume these charities would just be there for us forever, as and when we may need them, but that’s just not the case.

Many who have been diagnosed with a neurological condition and those caring for them, are often isolated, left struggling at home – and you don’t need to be old! Any of us may suddenly need this vital support.

Charities and the voluntary sector help to connect and support within our communities – empowering and ensuring a better quality of life for many, even keeping them at bay from hospital.

But what do you, as a volunteer, receive from your altruistic actions?

If you offer to volunteer, it doesn’t have to take up much of your time. You can make a real difference in others’ lives – more than you even realise! You will most definitely gain knowledge and meet some wonderful and inspiring people. Plus, in being kind and offering to help, is actually beneficial for you. There is a term known as the ‘Helpers High’ – as you give to others, this distracts you from your own problems, releasing endorphins making you feel good. Helping others gives you a sense of purpose, boosting your serotonin levels which lowers stress and improves your mood.

And in offering to volunteer, this can create a positive ripple effect, inspiring those around you. I have certainly had friends and family who have become involved with the various charities I have supported over the years.

So if you’ve been thinking of offering a bit of time to help others, why not get in touch with either your local or national charities, for a cause that may be close to your heart. You never know, you may learn new skills, gain new insight and meet some wonderful people as I have.

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How to Survive the Stress of Caring, and Look After Your Own Health

Blog post written by author of Who Cares?, Sara Challice. Who Cares? has been shortlisted in the Non-Fiction category of The People’s Book Prize 2020/21. Click here to give it your vote.  

 

Caring for a loved one is, without a doubt, a kind and selfless act. Not only does it give another a better quality of life, it may even extend their longevity.

But whilst caring, your altruism could cost you more than your time and energy, because around 70% of carers fall either mentally or physically unwell – this included myself!

During my time out recovering, I realised I needed to make changes so as not only to survive my caring role, but also to regain my health and start enjoying life again.

So how can you overcome the stress of caring, to become more resilient and safeguard your own health?

1. Check in with yourself

As a carer, you’re often so busy being there for everyone else that you ignore your own health. And during the pandemic, this is ever more so whilst trying to talk to your GP, let alone arrange a hospital appointment – all time-consuming tasks that take even more of your precious energy and time.

You may even be suppressing your emotions, as you’re so busy tending to and protecting those around you who are almost certainly classed currently as ‘high risk’ for coronavirus. The pressure can build up, bit by bit, and go unnoticed until crisis strikes.

Do you have a good friend or family member you could check in with for a short time, once a week? This can be either face-to-face (socially distancing of course!), over the phone or via Skype. Or you could try journaling – writing down your feelings and the issues you’re experiencing. Observing what is actually happening can help lead you to making better choices for yourself, as well as for your loved ones.

2. Take a break

If you see each day as a list of chores – just doing this, just doing that – you’ll end up simply falling into bed exhausted!

Even though times are ever more challenging, you still need to have regular breaks, as well as have quality time. You’re not just here for a loved one, you are also here for you!

Try taking a short break between each chore, even if it’s 10 minutes. This will help you pace the day. You could jot down a list of things you enjoy doing during these breaks, such as reading a magazine, having a kip, or calling a good friend for a chat. You can then pick from your ‘break menu’, when you stop for a rest.

3. Focus on the good stuff

There is often a lot to deal with and carers are often in survival mode – focusing on the issues, to ensure everything and everyone is okay – but this does not make for an enjoyable life.

What are you happy and thankful for in your life? It may just be a hot shower that morning, or your comfy bed. It could be having loving and kind friends or patting your pet. If I’d had a bad day, I would climb into bed and think of five things I was grateful for that day. It always put a smile on my face and put me in a better state of mind before sleep.

Just remember to be kind to yourself and recognise all that you do. You really are amazing, being there for loved ones. Make sure you are also there for you!

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Dignity in Care

My mission to promote better care begins

Not all care services and nursing homes have a training budget or, if they do, it may be very limited. In an attempt to raise standards in older people’s services I offered some free training on ‘Dignity in Care’ and ‘Care Quality Commission Essential Standards on Quality and Safety requirements’. Both courses were snapped up quickly by some services. I wish I could have offered more.

Every morning waking up was as painful as the previous mornings had been, especially when I searched my brain to see what I was doing that day. I cried. I felt raw, still suffering after the loss of Mum and Aunty Ann.

That day I was delivering a training session on Dignity in Care to staff who supported older people. I had a large group of 20. Usually I teach up to 14, but I guessed that as it was a free course, the manager had put in as many as she could.

The staff came from a variety of cultures and were very knowledgeable. They shared their knowledge on which cultures liked different foods and liked to be washed/bathed differently and those who needed support to have prayer time.

I was pleasantly surprised when two staff members shared their stories on how and why they had had to report staff who had abused some individuals they were supposed to be supporting. They kept the details confidential and did not give any names of the individuals who had been abused or staff involved, but it was clear that some staff had been suspended on full pay whilst investigations had taken place.

I had the utmost respect for these two people for reporting their concerns. It couldn’t have been easy with the individuals concerned being part of their team, but they had done it for the welfare of the people they were looking after. These two staff members wanted and needed to talk about it and I gave them the opportunity in the break times to do this on a one-to-one basis with me. Before they started talking I told them that I was bound by confidentiality but also duty of care and would have to report anything I had concerns about. Confidentiality has to be breached if a vulnerable person is at risk of abuse or harm.

Back in the training session, the staff members were very much aware of their ‘duty of care’. They understood that all professionals have a duty of care to the people they support and that they needed to ensure that the individuals they supported did not suffer any unreasonable harm or loss. Some, however, found the issue of choice difficult to work with and understand. Many people, whether they have a learning disability, or are older, or have dementia, may need support to make informed choices, and this includes informed choices about risks. People receiving care must be supported and, with the aid of a risk assessment, enabled to fulfil their dreams, needs and wishes.

On my ‘Dignity in Care’ course I wouldn’t usually cover manual handling and hoisting, but since my late mother’s ‘accident’ with the hoist, I had been asking questions about hoisting at every opportunity I got. I asked about the law, the Health and Safety Act 1974 and, in particular, the Manual Handling Operations Regulations 1992. These are regulations that staff need to adhere to. Each individual requiring manual handling should be risk assessed and it will be stated on the risk assessment and in the individual’s care plan how s/he is to be moved, what equipment should be used and how many staff should be involved in the manoeuvre.

All was going well until I asked this question: ‘Do you always use two staff if it says two staff?’ Many said ‘Yes’, but one staff member said, ‘No, not always.’

I could feel anger brewing up inside and I wasn’t sure if it was because of her biased attitude or because of what had happened to Mum. (Probably both!) I pointed out the dangers, but she responded, ‘I’ve done it loads of times and no one’s been hurt.’ I finished this subject by reiterating what they should do and informed the Manager during the tea break that this member of staff needed to understand what was meant by safe practice and why it mattered.

This blog is taken from Suzan Collins’ moving personal story of fighting for justice in elderly care, Beyond My Control.

If this story has affected you or you want to share your stories of dignity in care tweet us and join the #carersweek conversation.