4 tips to support people with dementia using a one-page profile

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 mum’s 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.

Mum’s 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 by talking to each other and by combining everyone’s experience. When creating my mum’s, 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 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.

For more information about personalised support for people living with dementia please visit our dementia blog.

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Dementia support using a one-page profile

An example of how a person living with dementia has used a one-page profile to communicate with support staff about how best to support him. Sidney was feeling embarrassed and sometimes threatened by the support he received. This story shows how his team captured and shared important information about Sidney to ensure he was supported in a way that made sense to him.

Sidney's one-page profile

Sidney’s one-page profile

Written by Support Worker Team Leader

Sidney, also known as Slim, is a very gentle man with a lovely voice. Originally from Jamaica, music has always been central to his life as long as it is upbeat. Now 83 years of age Sidney lives in Nuneaton in a residential service supporting people living with dementia

Sidney’s one-page profile was developed as he was becoming more distressed when being supported by staff with his personal care. Staff realised Sidney was distressed by the level of care he now needed due to decline in his cognitive responses.  Staff discussed with me and we used effective ideas to assist him so it was less stressful for him.

Sidney had become reluctant to get out of bed during the winter months. This is when he may become agitated and he may threaten staff. As we have cared for Sidney for many years, staff have experience, and understand his needs. We have used person-centred care and put into place a personalised care plan for Sidney, which caters for his needs and his likes, like having a radio in his room, have his clean clothes ready laid out ready for him to put on after his care.Staff who knew Sidney well had learned that everything must be warm when assisting him with his personal care. This included the room, your hands, towels, water, floor and creams. This made Sidney’s experience during personal care less distressing and it was this type of information that needed to be captured on a one-page profile so that others were able to support Sidney in the way that he liked.

I am a Team Leader where Sidney lives. I sat down with Gill from Helen Sanderson Associates, Sidney and three of the specialist support workers Peter, Lauren and Jackie, to produce the profile.

Since its production, all staff are using Sidney’s one-page profile to ensure they know and act on what matters to him on a daily basis. It means that Sidney is supported in a way that truly makes sense to him and so is happier accepting the support. It is the rich information on Sidney’s profile which ensures this. Because of his profile all team members now know that Sidney feels embarrassed when supported in the bathroom. They also know that playing music helps him to feel relaxed and that by preparing everything before entering the bathroom, the experience can be much quicker and Sidney feels happier as a result.

Previously if Sidney became upset a support worker might call for more staff to assist – having two or three people trying to assist him only made Sidney more distressed as it increased his fear.  Today, everyone knows this and knows how to ensure Sidney is supported well.

Since having his own one-page profile Sidney is much more likely to take help from staff and even thanks them for the support they offer him. He is much happier and is singing more than ever!

Choosing how to spend your time

Winifred's one-page profile

Winifred’s one-page profile

How a one-page profile can help people with dementia reconnect with their past, recall happy memories and make decisions about who they want to spend time with and what would make them happy.

Written by: Gill Bailey

Ninety-two year old Winifred Baguely can be heard singing and laughing as she helps the housekeeper out with her daily routines at Bruce Lodge where she lives. Winifred, who has dementia has always been warm, loving and generous but she hasn’t always been this satisfied and relaxed in her new home; until she produced a one-page profile with dramatic effects.

One-page profiles for both staff and people living at Bruce Lodge were introduced to achieve two things. For staff, it enabled a greater understanding of each other and meant that each week team members spent time away from their day to day activities to do something that they personally felt was an important part of their role. For the people living there with dementia, the one-page profiles acted as a job description, allowing them to direct their own support and ensuring that the people providing the support understood what was important to them.

All staff at Bruce Lodge, including housekeepers and maintenance staff, produced their own profiles. This exercise allowed the people living with dementia to be matched well with the staff team and choose who they wanted to spend extra time with based on their interests and what was important to them. Winifred chose to spend her time with Beryl the housekeeper because she said she enjoyed helping out with the daily chores such as polishing, sweeping and mopping. Winifred’s two daughters and staff at Bruce Lodge helped uncover this by sitting down with her and chatting over tea and biscuits to inform the one-page profile. They asked about good days and bad days, past and present. What was going well and what needed to change. What Winifred had enjoyed in her life in the past, and what she would do, if she could, in the future.

Winifred’s new relationship with Beryl and extra responsibility has had an extraordinary effect on her happiness and wellbeing. At home she would routinely clean the house, so before this was identified in the one-page profile as being important to her, a big part of her life and identity had been missing.

Maureen and Bernie, Winifred’s daughters, have noticed the change that the one-page profile has made to Winifred. She is happier, chatting more, using fuller sentences, sleeping better and is generally ‘’more alive’’. Maureen goes on to say; “The difference is astounding; mum was a housewife, a practical person who spent her life caring for her five children and our father, who died 20 years ago. Her desire to care for people was never blunted but the ability to do so was robbed from her and that left her very frustrated. These chores are helping her connect with other things from her past and are opening up new pathways in her mind. The first thing that we noticed had come back was her language – within a week of working with Beryl she was recalling words much better and introducing me to other people by name, whereas before she didn’t know who I was.”

Winifred now has enhanced choice and control over how she lives her life and how she is supported on a day to day basis.  Winifred can often be found well into the evening, long after the housekeeper has gone home, sitting and folding the laundry. This has simply become the way she chooses to spend her time and the impact this has had on her happiness is evident for all to see. Not only is her smile lighting up her own room but she can be seen beaming all over the home as she reconnects with what she loves most; helping to look after others and bringing joy to the people she lives with.

Is this care you would be happy with?

It started with a person-centred thinking course attended by Sue, the care home manager and now Sam, the people he lives with and the people who support them are on a life-changing journey. An example of how this man’s one-page profile has led to him reigniting old relationships and hobbies; making him feel like he has a purpose again. 

Sam's one-page profile

Sam’s one-page profile

Written by Gill Bailey

Sam is 78 and lives in a residential care home supporting older people on the Fylde Coast.

The manager, Sue, went on a person-centred thinking course and decided that things in the care home should and could change. She knew this required a huge shift in culture. This shift began with uniforms no-longer being worn, to create a more ‘family feel’ and a no ‘them and us’ culture. Toilets became communal – so there were no separate staff toilets, no staff mugs and sitting and eating with people who lived there became the way things were done.

Sue’s enthusiasm was contagious and the majority of the staff team are now competent in using the person-centred thinking tools. Each member of staff was taken off rota for two hours and asked to simply sit in the lounge in order to feel, hear and see the ‘lived experience’ of the people they supported. They were then asked “is this care you would be happy with?” The resounding answer was ‘no’ and so the desire for real change began in earnest.

They began to develop one-page profiles with everyone who lived in the home and staff developed their own which included their hobbies and interests . Sam who lives in the home developed his one-page profile with help from Sue.

The main thing that wasn’t working for Sam was that his friendships had all been lost after spending three months in hospital and then coming to live in the home four years earlier. Sam particularly missed his connection with the crown green bowling club he had belonged to for a number of years – he had lost all contact with his old mates.

Sam was supported to write to some of his old friends and as they responded, he gained the confidence to think about how he could reconnect with the bowling club, which wasn’t far away from the home. There was a spring in Sam’s step as he anticipated the possibilities.

The challenge now was finding the right staff member to support Sam to go and watch the bowling. Sue found that Greg, a new member of staff, looked the perfect match for Sam, as he too was a keen bowler. Sam agreed. Within a month, they went off to the bowling club together. Sam cannot bowl because of his hip injury but enjoyed catching up with his old friends, while Greg would play a few games. After a couple of months, it was as though Sam had never been away. Greg and Sam went once a fortnight.

Sam now writes the monthly newsletter for the bowling club. Prior to retiring, Sam was a keen writer and produced the church newsletter each week, so he feels that he is giving something back.

Sam’s life feels very different now and as he said recently, “I’ve got something to get up for, meeting the lads and I’m working on a newsletter”. This all began by listening well to Sam and developing his one-page profile with him. The information it captures is used by all those involved in Sam’s support to ensure that he is living life the way he chooses.

Read more about personalisation and dementia including blogs, resources and related media articles at www.personalisationanddementia.wordpress.com

Living with dementia – Shirley loves to feel the rain on her face

A powerful example of how a one-page profile can empower people living with dementia to direct their own support. Shirley is now supported in a way that makes sense to her thanks to the deeper understanding people have about what is important to and for her.

Shirley's one-page profile

Shirley’s one-page profile

Written by Narindra Devi and Gill Bailey

Shirley is 78 years old and a retired accountant living in Wolverhampton.  For the last five years Shirley has lived in a residential service supporting people living with dementia. Described as a strong character who is always kind and considerate, Shirley is very active and can rarely be found sitting down but prefers to be on the go, walking around and chatting to others.

As someone who has worked with numbers her whole life it isn’t surprising that Shirley still talks about and quotes numbers to people regularly. This is something that the staff who know Shirley well understand and are able to respond to. In the same way, the support staff who know Shirley well realise how important it is to enable her to freely move around and how she doesn’t like to sit still. Recently it became apparent that some staff didn’t know these important details about Shirley. She was being asked to sit down more which was causing her to be distressed and she was also getting upset when her support team didn’t converse with her about numbers and statistics; something that she loved to do.

Meeting together, the staff team realised that only a few of them knew what worked for Shirley and that they needed to find a way of sharing this information more widely so that everyone could support Shirley well. To do this they used a one-page profile. Together the team talked about all the things that were important to Shirley and what best support looked like. They shared what they like and admire about Shirley and these appreciations were all captured on her one-page profile.

The profile communicates vital information about how to support Shirley well. All staff must be aware never to try and make Shirley sit down as this would lead to her becoming very distressed and could lead to her harming herself or others. They also learnt that when giving Shirley medication they should wait for her to pass and never chase after her as this would create great distress and anxiety for Shirley. Another rich insight that is shared on Shirley’s profile is her dislike of people touching or talking about her feet. Making staff aware of this means they can avoid upsetting Shirley unintentionally.

Shirley now has more control over how she lives because the people who support her understand what is important to her. She now goes for walks outdoors as much as possible. Previously staff would have shied away from supporting her outside if it was raining but they now understand how important this time is for her and acknowledge that going out for a short time in a little rain won’t cause Shirley any harm and actually she appears to love to feel the rain on her face if her huge smile is anything to go by!!

Even new staff can get to know Shirley well and quickly by looking at her one-page profile.

Shirley is much more relaxed and content since developing her one-page profile. It is my belief that if we are to truly personalise support for people living with dementia, we have to support a way of living which makes sense to the person as well as ensuring they stay healthy, safe and well. This has been achieved for Shirley.

For more details on Gill Bailey and Helen Sanderson’s book; Personalisation and Dementia please visit Jessica Kingsley Publishers.

At the heart of support

A powerful reminder of how what might seem like a small gesture can significantly improve a person’s happiness and wellbeing. Mary was brought to tears when her support team introduced her to the home pet, after stating how important animals were to her in her one-page profile.

Mary's one-page profile

Mary’s one-page profile

Written by Lancashire County Commercial Group Care Services

Mary is 75 years old and has dementia.  She was living in a care home and we were asked to see if Mary could move to Beaconview. When we assessed Mary she was laying on her bed with the bed rails up. Mary is registered blind and has had some paranoid experiences. The staff from the home where we saw her said that ‘she liked to spend time in her bedroom’. Mary was very quiet and appeared to be quite isolated.

During our assessment, we asked Mary what her hobbies were and what her preferences were for a variety of things. We also asked her if she really did like to spend all her time in her bedroom, her answer to this was that she liked to spend some time alone. Mary also told us that she loved animals.  From this conversation we were able to create a one-page profile for Mary before she came to Beaconview.

Once Mary’s one-page profile was completed the care staff were able to read it and had an understanding of what her needs and preferences were, whilst also having a clear understanding of what was important to her.  Mary’s experience in moving to her new home was enhanced by the fact that staff were able to have conversations that were more pleasant and personal to her as a result.  Because of this all the staff at Beaconview were able to begin to build a trusting and meaningful relationship with Mary from the very moment she moved in.

We had recently bought a bunny for Beaconview and because the care staff knew from her one-page profile that Mary liked animals they decided to take the bunny to Mary so that she could enjoy its comforts.

Mary’s face lit up when she was informed that the bunny was here to see her, we asked her to put her hands out so that she could feel it. Mary was so pleased that we had ‘thought about her’ and the things she liked that she began to cry. Mary then cuddled the bunny and kept talking to him. Mary never did spend all day in her bedroom after that as she had something to focus her attention on. She felt a great sense of wellbeing each day.

Mary kept thanking the staff for what they did and although it seemed a small gesture on their part it really made a difference to her life.  The care staff were also extremely pleased that they were able to bring her so much happiness.

Having a one-page profile makes a massive difference to a person’s wellbeing, as it helps to build and form good relationships and it makes staff realise from a snap shot what is most important to a person.

The one-page profile is easy to read and easy to understand. This skill is very useful to all other professionals also.

Before we had one-page profiles it was difficult for all the staff to understand what was important to that particular person. The profiles ensure that not only is the person supported in a way that makes sense to them but that what matters to them is also included in their support.  The important bit is to act upon the individual preferences outlined in a one-page profile; truly keeping the person at the heart of all support.

Triggering happy memories

A powerful example of how a one-page profile can draw out the important information needed to support someone with dementia to re-connect with their past and feel happy and safe in their surroundings.

TobyWritten by Tracey & Rose from Merry Hill House

Eighty-seven year old Toby was born and bred in Wolverhampton. Described as a real gentleman, Toby’s wife sadly passed away five years ago. His son Sean is his main carer as Toby is now in the advanced stages of dementia. Sean says Toby was a hands-on husband and father and his family was always his priority. Toby has an infectious smile and personality to match, he has always had strong work ethics and Sean can’t remember his dad ever having a day off. He recalls fondly that Toby would often say; “the harder you work and save for something, the more you’ll appreciate it.”  Throughout his life Toby has liked things to be ‘in place’ and would always look immaculate.

Toby came every six weeks for a three night respite stay here at Merry Hill House. During his stays he would go around the unit collecting other people’s shoes and lining them up in his room. He’d also be fascinated with the electrical sockets and get quite agitated when staff tried to move him away for his safety.

A staff member sat with Toby and his son to discuss one-page profiles and how through discussions we could find a solution to help Toby feel happier, safer and more independent in his environment. Toby was present but unable to contribute a great deal verbally due to his dementia which meant that his son Sean was the one that provided the rich insight into Toby’s life.  It became clear very quickly that Toby led a full and active life, working and spending quality time with family. For many years he was an electrician and in his spare time he would take his son to a unit he owned where they built a barge together.

As a group, staff were asked to think about how we could use the information gleaned from his one-page profile to reduce the risk and to increase Toby’s wellbeing, giving him back the feeling of control in his day to day life.  We wanted to help Toby re-connect with his past and for him to feel busy as this is what he was used to. Together the team and Sean made a list of some of the items that would help Toby. Sean was to pack extra pairs of shoes when Toby came to stay and we were to provide shoe polish and a blacking brush so that he could polish shoes just like he did for his family as a child on a Sunday afternoon. We also filled a box with electrical items like plugs, light switches and a flex. Whenever Toby started touching the sockets or gathering shoes we were able to lead him to his boxes and he was happy again.

We have noticed a great difference in Toby’s wellbeing as has Sean who now uses the boxes at home too. Toby will spend many an hour polishing shoes until they are pristine, he will also sit with a small screw driver taking the plugs apart and connecting flex to them. We learnt this important information from Toby’s one-page profile and we are now able to support him to do the things that trigger his happiest memories; a wonderful outcome from having a good conversation and recording the important information on just one page.

You know me so well!

Written by Victoria Metcalfe, Dementia Consultant, Anchor

Victoria Metcalfe

Victoria Metcalfe

I had a birthday this week. 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 that 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.

This week I’m attending the annual Dementia Congress. I’ve spoke most years but this time I’m going just 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’ll be 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!

Look around the rest of this site using the menu bar at the top of this page to learn more about one-page profiles, how to create your own and to read stories from people using them from birth to end of life.

Helping Kenny reconnect with his past

A powerful example of how one-page profiles can help people living with dementia share what is important to them and how best to support them. Kenny wasn’t using speech to communicate anymore and his mobility had suffered after a fall. His family and support team needed to share what they knew about Kenny and his history with each other to help him communicate better and have more choice and control.

Written by Gill Bailey

Kenny picThe company of his wife and mother, chocolate, magazines, newspapers, tea with two sugars and long bubble baths; these are the things that are important to Kenny. The people who support Kenny know this straight away even if it’s the first time they have met him. How? Because it is written on his one-page profile.

Kenny is 64-years-old and is one of the warmest people you could wish to meet. He has lived in a home which supports people with dementia for five years.

As a young man, Kenny was a professional football player. Aged 25, he went into the textile trade as a salesman until retiring due to early onset dementia at 54–years-old. Kenny loved sport and played every sport going.  His mum Ethel said: “if sport had been his exams, he would have been top of the tree in them all!”

He loved golfing holidays with his mates and he also spent many happy weekends away with his wife Jean in their caravan, which was his pride and joy. Kenny and Jean didn’t have any children but, as Jean said;”we were always content to just have each other and our group of friends.”

Kenny was a very confident man who could go and chat with a roomful of strangers easily. He enjoyed socialising with friends, and a drink in his local most days on his way home from work.

As Kenny’s illness progressed it became clear to those close to Kenny that he was bored and restless.  Kenny no longer used any words to speak and was unable to move around unless supported by two staff members or in a wheelchair due to a fall which led to a broken hip a year previously. A person-centred review meeting was arranged with Kenny, his wife Jean, his mum Ethel. I was the facilitator and we brought in the support staff who knew him best, including Adrian the nurse who had specialised in dementia care.  Prior to the review, they carried out a functional assessment to establish a broad brush view of the stage of dementia Kenny was at, which at best could be helpful in creating activity which would increase Kenny’s well-being and ensure he had the things that mattered to him present in his life.  At least it would give those close to him ideas to try in order to learn what worked well for Kenny.

At Kenny’s review meeting, everyone gathered their collective learning about what was important to him, what best support looked like from his perspective, any questions to answer or issues to resolve; and what was Working and Not Working from the perspective of Kenny, his family and the staff team. This was a process which helped everyone think about Kenny’ life with him.  Its purpose was to inform action that made life better for Kenny and his allies. Those who knew Kenny well recognised what he was saying with his behaviours and so they began to record that rich information onto communication charts. This would be added to by everyone who spent time with Kenny as they learnt new information. They also explored how they could provide opportunities for Kenny to try new things to help them learn more about what would make life better for him.

The most significant outcome from the meeting was the development of Kenny’s one-page profile which would prove invaluable to staff as they used it as their job description (how best to support Kenny) on a day to day basis. It meant that even new staff could get to know Kenny quickly and support him in ways that made sense to him. Having the things that were important to Kenny written down on one sheet of paper made a massive difference. Knowing the important people in his life, how he takes his tea, what treats he likes, what calms him down and what works him up enabled the team to support Kenny well.

As well as capturing this vital information, the great in-depth conversations that occurred between Kenny’s family and support workers when creating the one-page profile meant that they were able to share history and personal knowledge that could be used by each other to help Kenny feel more in touch with his past and reconnect with familiar times.

Life is much more interesting for Kenny these days – evidenced by the spark in his eyes and frequent smile on his face – a rarity before staff explored these approaches with him. His support worker Jane described it as a “transformation…’’ and it isn’t just Kenny’s life that changed so positively. The people who care about Kenny now have the confidence that people understand him well and appreciate him for his personal talents and gifts.

You can use conversation cards to ask good questions that draw out rich information, when supporting someone with dementia and their family to create a one-page profile.

Dementia Care Mapping leads to one-page profile

An example of how Dementia Mapping led to the introduction of a one-page profile for Jenny, changing her world for the better. Jenny used to spend her time agitated or withdrawn. Now that her carers know her well and use what they know to support her, she is engaged and content.

Written by Gill Bailey

Jenny picJenny has lived in a residential home for the past six years, she has dementia and staff were finding it difficult to cope with some of her behaviour. Jenny had started walking around hitting out at staff members, other people living in the home and the walls.  This was very distressing for everyone involved. Three staff were required to support Jenny when she needed assistance with personal care tasks and this was a time of great frustration for her causing her to constantly hit out at them. When Jenny was not walking about the home she would remain in her bed all day. Jenny was also refusing her medication. Communication had deteriorated so much that Jenny was refusing all physical contact with the people trying to support her and at this time she didn’t talk at all.

The situation saddened the staff and they felt that they were letting Jenny down, they were barely meeting her basic human needs and she had no quality of life.

In November 2008 the home asked two Dementia Care Mappers to map Jenny; they wanted to seek ways to understand her. The mappers spent two days observing Jenny as she walked around the home. The results were then shared with the care staff of the home. During the two days observing Jenny, recordings showed there was very little interaction with her, but when care staff did speak to Jenny her mood rose and she would smile. She also appeared to enjoy rubbing the wall paper and her clothing which were very textured. It was noticed that Jenny interacted with music that was playing, by clapping and singing along to it and that she picked up a bundle of towels and carried these around with her.

Discussions took place with the staff to explore how Jenny’s quality of life could be enhanced.  Staff explained that because of the home’s routines they had not noticed what Jenny was actually doing other than walking around and were constantly asking her to sit down to keep her safe. Once staff were able to understand Jenny’s behaviour they were able to suggest potential activities around the home that Jenny may like to be involved in.  Ideas included a tactile/rummage box to meet Jenny’s sensory need, and to find out what type of music Jenny enjoyed. Staff were asked to explore Jenny’s life history as this may explain some of her behaviours and also to find out what her interests and hobbies were in the past.

Key to this new approach was to involve Jenny, her family and support workers that knew her well in creating a one-page profile.  The one-page profile pulled together the rich information from the observations and the people closest to Jenny. It recorded what was important to her and how to support her well. It also celebrated her personal talents and gifts so that people using the profile got a snapshot of her as a ‘thoughtful, caring, loving and affectionate’ person.

The one-page profile was used together with other person-centred thinking tools such as ‘working/not working’ to personalise jenny’s support. A year later the Dementia Mappers returned to map jenny again. The results showed a real improvement not only in the home environment, but also in Jenny’s wellbeing. In the map that took place initially Jenny’s wellbeing score was that of a +1. This time it had risen to +1.9. Jenny spent all of her time in a positive mood/engagement level and 46% of her time was in a +3 level.

There has been a real change in Jenny and both her family and other agencies involved with her support have commented that she is a new woman; Jenny appears content and is involved in meaningful activities around the home such as folding the laundry. The manager explained that when the initial map took place Jenny would not even go outside but now she loves to walk around the garden with staff.

Jenny’s one-page profile has grown and evolved into a richer document (a person-centred description) over the past year and staff are more aware and ensure that Jenny is getting those little things that are important. They explained that recently they found out that she loves Mars bars and when she lived in her own home she would buy them in bulk. This new learning is continually added to her profile ensuring it is always up-to-date and serving Jenny well.

Learn more about using person-centred thinking tools in Dementia Care Mapping here.