Deprivation on our minds

Tan Clover

Tan Clover

Written by Tan Clover of Helen Sanderson Associates

For anyone with any interest in social justice the deprivation of liberty stories in the news towards the end of January made distressing reading.  On the 16th many papers covered the story of Mr Dvorcaz. His story came from the detail of a report compiled in August last year by her majesty inspectors of prisons. The report, from an unannounced inspection of into Harmondsworth Immigration Removal Centre, identified how an 84 year old man living with dementia had been “needlessly handcuffed in an excessive and unnecessary manner”.  The gentleman, named in the press as Alois Dvorcaz from Canada, died in hospital. He had been in handcuffs for at least 5 hours on the day he died. He died in handcuffs. No human being could possibly disagree with Nick Hardwick, Chief Inspector of Prisons , when he said that on this occasion “a sense of humanity was lost”.

Depriving a human being of their liberty should never be undertaken lightly, and any decision to do so should rest heavily on our collective conscious. So we should all be glad and take strength from the fact that we have the Mental Capacity Act [2005] (MCA) and  its Deprivation of Liberty safeguards [2009](DoLS) to guide and support us.

Or do we. We all await the outcome, due this month, of the House of Lords enquiry into the MCA [2005]. Many readers will have been involved in submitting evidence when the call to do so was made last year. I don’t know if you have read much of the submitted evidence . It runs to two volumes, so I appreciate if you haven’t quite got round to it all of it yet.  But if you can persevere it does make interesting reading. Not least to show the frustrations of so many practitioners in their understand and application of the law.

The latest figures published by the Health and Social Care Information Centre (HSCIC), highlighted in a recent Care Quality Commission (CQC) report may not grip the public in the way that the shameful treatment of Mr Dvocaz did, but they warrant equal attention. The data shows that of the 11,887 applications to deprive a person of their liberty made under the DOLS in 2012/2013 some 53% related to people living with dementia. That is 6,355 human beings.  Of those applications 3,780 were granted. 2,979 of these were granted by Local Authorities, the supervisory bodies for care homes,  and 801 by Primary Care Trusts, the body for hospitals.

So, do the HSCIC numbers equate to good news? The Alzheimer Society estimates that there are some 300,000 people living with dementia  in care homes in the UK. The HSCIC statistic relate only to England making direct comparison difficult. But even so,  one might guess that a very high proportion of people living with dementia in care homes are not deprived of their liberty.

Maybe not. David Behan , Chief Executive of the CQC, has recently said that there can be “no excuse” for services not to comply with the MCA. However, the CQC report warns that the understanding and application of MCA and DoLS remains low across both care homes and hospitals leading the report authors to state that it was difficult to avoid the conclusion that some people in care homes and hospitals may be subject to restrictions without the full protection of the MCA. Which leaves us all to reflect upon one key question.  That is how many people living with dementia are unknowingly being deprived of their liberty?

 

 

 

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A daughter’s experience; living with dementia

Written by Laura Hodgson

Laura Hodgson

Laura Hodgson

How can I describe who my mother is? To say succinctly who she is, who she was, who loves her, who she loves and what she values is a heart-wrenching exercise and feels strangely intrusive. My mother can no longer write nor can she easily articulate her thoughts and needs and certainly cannot share memories. I must do that for her. When my mother finally had to move out of the home she had shared with my father for over forty years into her new home, a residential care home for people with dementia, I tried to say who she was in preparation for her move. When the decision to move someone finally comes it is out of necessity and there is very little time to prepare.

My mum was moved five years after her diagnosis and after my dad had heroically looked after her with the support of carers, family and friends. Finally however her condition reached the stage where she needed professional nursing care. The Friday before she moved I wrote a simple profile of my mother. This was something which I instinctively felt I needed to do to make the transition easier. Without insight into who my mum is I worried that she would be a stranger in her new home. What does she like? Above all, chocolate, but also strong coffee, weaker tea with no sugar. Cats and small children. Wine with her meal. Who are her friends? There have been many over the years but Ros, Michelle, Al, John and David would all be visiting her. What does she enjoy? Gardening and cooking and being with her husband. What will annoy her? Intrusion, over-familiarity, aggression, a lack of respect for her personal space. What does she value? Intelligence, manners and humour. Did she have a sense of humour? Yes, and it is still there if you take the time to find it. All these things I tried to capture in her profile. Briefly and simply it gave an insight into a very fragile woman suffering with advanced dementia. Of course a profile cannot prevent her irritability or her completely uncharacteristic, but now frequent, temper tantrums born out of frustration with the hideous illness that she still tries to fight, but her profile does go some way to explain what might cheer her up, calm her down, engage her or relieve her distress.

A profile is not a panacea but it will provide the foundations for the new relationships which my mum will need with her carers for a more fulfilling future life. It will provide insight into who they are cleaning, feeding and talking to but most importantly it brings greater dignity to my mum and contributes towards a much more meaningful and dignified life where both these things are too often scarce.

You can learn how to create your own one-page profile and read more stories of people that have used them from birth to end of life at http://onepageprofiles.wordpress.com

What do you do when something isn’t working?

Written by Gill Bailey, HSA

Gill Bailey

Gill Bailey

In our book Personalisation and Dementia Helen and I share Fred and Freda’s story. I thought it was an important story to include in this blog because it is a powerful example of how person-centred practices can support people with dementia to have better choice and control.

Fred and Freda have been married for 45 years; they are what people would call a perfect match! Fred was diagnosed with dementia in 2004. Freda and Fred made a decision to do as many of the things they had always wanted to do during the earlier days of Fred’s diagnosis. They went fishing, on four cruises and crucially for Fred went to Wembley stadium to watch his team, Chelsea, lift the FA cup.  So Fred continued to live well and spent many happy days with Freda.

Over the last two years Fred’s dementia has had a much greater impact on the couple. Fred had become totally dependent on Freda and she was finding it difficult to cope, despite having five nights respite each month when Fred was admitted to a local hospice. This was not working for Fred, Freda or the staff team who supported Fred at the hospice. Freda describes these times as the worst part of their journey together. Although she was getting a regular break from the physical demands of caring for and supporting Fred, her emotional distress at seeing him so unhappy and unsettled at the hospice was creating so much anxiety for her that she considered the option of a residential home, although that was something neither of them wanted.

The team supporting Fred and Freda decided to use the 4 plus 1 questions and asked Freda to share her contributions with them too.  4 plus 1 is tool for reflection and learning about what works and doesn’t work. It asks the following questions:

  • What have you tried?
  • What have you learned?
  • What are you pleased about?
  • What are you concerned about?

The answers to these questions lead to the ‘plus 1’ question, which is: “Based on what we know, what should we do next?”

These questions are powerful to use when reflecting on a particular area of someone’s life when they face a particular situation or challenge.

This is what we leaned from Fred’s 4+1

Tried?

  • Used end room to avoid disruption to others
  • 1-1 support
  • Night sitting
  • Sedation
  • Expert advice – bringing in consultant from the dementia clinic. Visit from Admiral Nurse
  • Male staff
  • Wife staying until Fred falls asleep at night
  • Playing music – Mozart

 

Learned?

  • 1-1 night sitting aggravated Fred further
  • If two nurses were unable to support Fred, there was no point in calling more staff in
  • Using the end room – too much activity going on because it is near the nurse station which disturbed Fred further
  • The sedation didn’t work due to the knock-on effect on Fred’s well-being
  • Expert advice (consultant/ Admiral Nurse)  couldn’t suggest anything further to try
  • Fred appeared to respond better to male staff
  • Freda staying until Fred fell asleep didn’t help as he simply woke up distressed soon after she left

 

Pleased about?

  • Experts, i.e. consultant, Admiral Nurse said staff were doing a good job and couldn’t offer any further ideas – re-assuring to staff
  • Male staff having a positive impact

 

Concerned about?

  • Staff do not have specific training in dementia care
  • The facilities/environment of the building are confusing to Fred
  • Fred gets up in the night and appears to threaten others while trying to leave the hospice and that could result in harm to himself or others
  • The amount of time nurses have to spend with Fred leaves other patients unsupported

 

Do next? Explore the sitting services from a local provider organisation, so that Fred can be supported in his own home while Freda goes to stay with her sister and gets a break from providing support this way

 

The result of doing this was that instead of going to the hospice, Fred is supported at home while Freda has a break away from home and stays with her sister.  This might seem like an obvious solution but until you ask the right questions and explore what is working and not working for someone in depth it can be hard to imagine that there are workable alternatives.

This new way of supporting Fred and for Freda to get her respite, has made life much more bearable for both of them. I think that this is a really strong example of how by applying a person-centred thinking tool to guide conversations and facilitate meetings, challenges can be identified and solutions found that can change the lives of people living with dementia.

Dignity and respect?

Written by Sally Percival

Sally Percival

Sally Percival

My mum has always been very independent. A few years ago she took a fall at home whilst moving a piece of furniture and broke her leg. It wasn’t diagnosed for a year and in that time she had countless Xrays and hospital visits as her circulation started to fail and her mobility suffered more and more. By the time the doctors picked up the break she was almost unable to walk and the hospital insisted that she was discharged to a care home where she could receive additional support.  By this time it wasn’t just her physical health that was deteriorating but she was acting differently too. I know now that these were the early stages of dementia but at the time it just seemed that mum was becoming a bit more forgetful and seemed less bothered about what she said and who could hear her! She would comment loudly about what people were wearing and how they looked – well within earshot and apparently without concern that they might be offended. I knew something was very wrong when one day I visited to find her complaining about not being able to get the mobile phone to work only to realise later that it was the TV remote control she was trying to speak into. It was obvious then that she needed more support but being discharged to a care home did not sit well with either of us.

In fact, mum hated it and I hated seeing her there. I know that there are some very good care homes but this was certainly not one of them. The staff seemed totally disinterested in her needs or in treating her with dignity and respect – they would leave her alone in bed for hours at a time and had taken to hiding her emergency buzzer so she couldn’t call them; “she is a very naughty girl” they told me “always buzzing for no reason”. I’d regularly visit to find they had put her to bed for the night at 4pm in the afternoon and they seemed to do the same with the other people living there too – out of sight out of mind.

I know about and have successfully used one-page profiles with my son for years. He has a diagnosis of autism and using his profiles has helped immensely (in particular in school and to aid his transition) to direct his own support and ensure that people recognise and appreciate his special talents and gifts rather than focusing on his condition. When I introduced the staff team at mums care home to her one-page profile they were totally disinterested. I explained that it detailed what was important to her and how best they could support her in an easy to read way – perfect when there are lots of people involved in care. Instead of embracing the tool and using it to support mum well, they would hide it away in her draw and continue along the routines that suited them.  In truth I think they thought I was a bit of a hippy and didn’t consider how using a one-page profile could benefit them or my mum. Every visit I would take it out of the draw in mum’s room and display it prominently and every time I left they would put it away again.

It came to a head when I arrived one afternoon to find her alone in bed and choking on her own vomit. She was on her back and couldn’t adjust herself to clear her airways. The emergency buzzer was nowhere to be seen; hidden away from my mum so they didn’t have to respond to her needs. It was terrifying . When I finally was able to stop my mum from choking and settle her down I went to find help. It took me 20 minutes to get someone to assist me. I have never been so enraged in my entire life.  I called the social worker and told her I wanted to move her immediately and arrange for a personal care plan and budget for my mum. The social worker told me that individual budgets are not for older people so I made a complaint and got a new social worker. It wasn’t easy but we fought for my mum until we got her the support she so desperately needed.

Mum is now back at home. She pays for her own personal assistants and care agency with her individual budget and is back in the driving seat where she belongs. She had lost 5 stone in the care home but after being home for just a few months she put the weight back on and her health and happiness improved dramatically.

Mums one-page profile is now used by her staff team and we update it whenever we need to communicate something new. It even helped us to  employ the right people because  we had already identified the things that were most important to my mum and how best to support her which meant we could match the right people to the role.

There are many reasons that the care home was not suitable for my mum but I believe that how they reacted to her one-page profile was a clear indication that they had little interest in treating her as an individual, celebrating who she was and supporting her to do the things that were important to her. My mum is happy and well again and loving being back at home. She may be older and more frail and she may be forgetful and even confused at times but  she is still an independent strong woman and she is still my mum and deserves to live her life the way she chooses and direct her own support.

Tips for using a one-page profile well with people with dementia:

1)      Involve the person, family and friends when creating the one-page profile. You can learn so much my talking to each other and by combining everyone’s experience. When creating my mums, myself, my sister some friends and my mum sat down together and had good conversations about her life, her passions and what was important to keep her healthy and well as well as happy and in control.

2)      Don’t over complicate your one-page profile, keep it simple and concise.

3)      Always ask the person what colours they like, colours are really powerful, my mum was very specific about the colours that she wanted, it wouldn’t have felt like her profile if it was red or orange.

4)      Don’t forget photos, they are vital, take time to select ones that are meaningful to the person.

You can learn more about one-page profiles, find further examples of their use and get help to create your own by visiting www.onepageprofiles.wordpress.com

9 steps to personalised dementia support

Written by Helen Sanderson, CEO of Helen Sanderson Associates 

Helen Sanderson

Helen Sanderson

I recently wrote a book with Gill Bailey called Personalisation and Dementia. It shares the lives and journeys of people and their families whom we have directly worked with over the last five years.  As well as our work as person-centred thinking practitioners, Gill is a carer for her aunt who has dementia and I am a volunteer at a home for people living with dementia.

Sharing these stories, with people’s permission, and recording quotes is the closest that we could come to hearing from people who live with dementia. Along this journey we have captured some rich insights and have been able to see, first-hand, the differences that were made to the way individuals live their life and directed their own support through using  person-centred thinking tools. We are of course still exploring, trying and learning about how to ensure that people with dementia have the lifestyle and support that they deserve and writing for this blog is one of the ways we hope to record this learning.

dementia vissualThe number of people that experience and are affected by dementia is growing rapidly. In fact just this week David Cameron has called a G8 Summit to discuss with other world leaders how collectively we should be addressing the growing demand there will be on health and social care services, families and communities in the future. I strongly believe that good support for people with dementia lies firmly in the personalisation of dementia support.  Staying focused on people with dementia not just in their community, but making a contribution to community and civic life, is an area that is crucially important for all of us. There is so much more to learn about how to make this a reality but our journey starts by looking at how person-centred practices can be used to create a new relationship between the person with dementia and paid staff and designing services and supports that meet the specific needs of individuals.

ebookHaving researched and written our book, Gill and I found that we could summarise 9 person-centred practices to deliver good support for people with dementia into one eBook. This could then can be used as a practical guide for anyone looking to personalise dementia support. You can download the eBook for free from the resources page of this blog site. In brief here are the 9 person-centred thinking practices we discuss and why we believe they should be used with people living with dementia:

  1. One-Page profiles: Personalisation starts with the person; knowing who they are what matters to them and how they want to be supported. A one-page profile is the foundation of personalisation.
  2. Communication charts: Personalisation means making sure that the person has as much choice and control in their lives as possible. The communication chart is a powerful way to record how someone communicates, with words and behaviour. Often behaviour that is described as ‘challenging’ is a result of staff not understanding what people are trying to communicate.
  3. Decision making agreements: How people make decisions, and how often, is related both to their ability (mental capacity) and their opportunities to make decisions. Mental capacity simply means the ability of an individual to make their own decisions. Many people living with dementia may lack the capacity to make big decisions, such as where they live, but are often able to make day to day decisions such as what to wear or who to sit with.
  4. Person-centred reviews: an informal meeting that looks at what is working and not working in the person’s life from different perspective to get the full picture.
  5. Individual time and matching staff: Truly personalised support means people choose how they spend their time and who they spend it with.
  6. Learning logs: These are what we use to learn how to make changes to better support a person.
  7. Developing a group activity: Using one-page profiles to develop group activities based on shared interest and hobbies.
  8. One-page profiles and volunteers: Extending friendships and relationships through dementia friends, volunteers, local businesses, faith communities, time-banks and Community Circles.
  9. Working Together for Change: Following 8 steps to achieve and learn from real change.

Read the eBook in full here.

You know me so well!

A one-page profile re-blog by Dementia Consultant Victoria Metcalfe 

Victoria Matcalfe

Victoria Metcalfe

I recently had a birthday. It was one with a zero in it… I sat nervously in my living room all day, responding to birthday well-wishers by text and email, dreading the possibility that one of my nearest and dearest might have had the bright idea of throwing me a surprise party. I hate surprises. I love surprising other people – but I’m awful at being taken by surprise. Thankfully, this message must have trickled through somehow and it seems I needn’t have worried; my friends know me well!

Knowing someone well is the focus of a big piece of work I’m involved in at the moment. I’m a Dementia Consultant working for Anchor and we have been looking at how one-page profiles can be used to ensure that the people who live and work in a care home can really know and understand each other well. One-page profiles do much more than this of course. They help people with common interests and outlooks be matched together, they communicate important information for people who might not be able to communicate it themselves, they empower people to direct their own support and live the life they choose, but ‘knowing someone well’ really is at the heart of the concept.

Over 25 years ago I had a chance encounter with a young man who had Alzheimer’s . He changed my outlook on life. I can clearly remember to this day my first meeting with him and how distressed he seemed about being unable to communicate with the people around him.  I remember those same people equally as clearly and how little they were attempting to engage and understand him. They saw him as a bunch of symptoms not a person and it was incredibly sad to realise.  My overriding feeling about this was one of injustice and it is the injustice of people being marginalised or defined by their illness that still motivates me today to be person-centred in everything I do; to have empathy, compassion and most importantly of all, to care about knowing people well and basing support on this in-depth knowledge of them.

I’ve never had a planned career path – it just wasn’t something that I set out for myself. But I’ve been working with people with dementia for more than 25 years now, with social services, with the Alzheimer’s Society and for the last 13 years with Anchor. I knew when I joined Anchor that I agreed with and believed in their organisational values but it is the people I work with and their relationships with the people we support and their families that has made this job so worthwhile for me.

Anchor is the largest not-for profit provider of support and housing for people over the age of 55 in England but that’s not what makes us special. We are special because we believe in seeing and treating people as individuals. We provide person-centred care and moreover we want to improve on this further, embedding person-centred thinking deep into the culture of our organisation by making tools like one-page profiles commonplace for colleagues and customers.  We believe in doing with a person not doing for them. In supporting family and friends to adapt to a person’s changing abilities and always focusing on what they can do not what they can’t do. In a world that can see older adults as broken people, our celebration of people’s individual talents and gifts and determination to support them to live the life they choice is something I’m really proud to be a part of.

My own one-page profile describes what people like and admire about me, what is important to me and how best to support me. Needless to say I have included in it that I don’t like surprises – something which my friends might know about me but might be useful for a work colleague to know too. I’ve already changed my approach to team members after reading their profiles and understanding them better. It’s strange, you can work with someone for years and think you know them so well only to learn important information that you just hadn’t uncovered before – this is the power of the one-page profile; the succinct way it communicates the essential information to enable relationships, collaborative working and support.

Last month I attended the annual Dementia Congress. I’ve spoke most years but this time I went to soak up the information, to learn about the new and innovative ways people are transforming care for people with dementia, to meet colleagues and share best practice. I was shouting from the roof tops about one-page profiles and how this relatively untapped resource could revolutionise care for people with dementia. I believe that the one-page profiles that we are introducing in Anchor really will change people’s lives;  helping people with dementia live a life that makes sense to them in the way that they want and all based on a deep understanding of who someone is and what is important to them. Everyone should be able to say ‘you know me so well’ and soon they will!

Personalisation and dementia at Bruce Lodge

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Personalisation in Dementia Care film

Personalisation in Dementia Care film

Written by Helen Sanderson, CEO HSA

The number of people experiencing dementia and future estimates based on an ageing population, has led to an increased focus from policy makers, health experts and community leaders. The Prime Minister’s ‘Dementia Challenge’ is evidence of this heightened agenda.

Whilst there are examples of personalisation in residential care for people with learning disabilities (e.g. Making it Personal for Everyone, by Steve Scown and Helen Sanderson, 2011), there have not been any examples of this in residential care for people with dementia. We formed a partnership with Stockport LA and Borough Care Ltd, to work with staff and the 43 people that live at Bruce Lodge who experience dementia, to identify how to achieve better choice and control and support staff in this new way of working.

The decision to personalise care at Bruce Lodge was driven by listening to the people that live and work there, families and partners. Through this feedback and HSA’s knowledge of effective application in other sectors, it was identified that more could be done to support people to have greater choice and control.

We have been working closely with partners, families, the staff that work at Bruce Lodge and the people that live there to introduce person-centred practices that would pesonalise the dementia support. We introduced one-page profiles for all people living and working there as well as a process by which people could be matched well together based on their common interests. All people living at Bruce Lodge now how 2 hours of personal time allocated each month where they do an activity that they choose with a person that they choose to do it with.

People are now seen, treated and supported as individuals. The one-page profiles have played a big role in people directing their own support as much as possible, and staff paying attention to what matters to each individual. People get consistent support even when lots of different staff are involved in their support, and even where people do not communicate verbally.

The individual time means that people have complete choice and control over some of their time – choosing what they do, when and where. They share this time with a staff member who shares that interest. The rota is written around this to ensure consistency. Two hours a month – it may not sound much, but people say it has made huge difference to their well-being.

We will be sharing  our learning from our work at Bruce Lodge through  this blog and hope to hear the experiences of others personalising support for people with dementia.