Understanding what is important to someone so you can support them well

An example of how this gentleman has developed new relationships with the people he lives with by sharing detailed information about himself on his one-page profile. As well as directing his own support and having a greater sense of choice and control in his life, Thomas has found things in common with the people he lives with that they can now talk about together.

Thomas' one-page profile

Thomas’ one-page profile

Peter  is 89 years old. He likes to be called by his middle name; Thomas. He did live in Rushall which is just outside Walsall but came to live here in 2011.  Thomas likes to be organised.  He likes his routine and in his own words is ‘very regimented’ in his ways – his main support needs are around mobility as he has to walk with two sticks.

We wanted to create a one-page profile with Thomas to help us understand him better as a person and not just someone who lives here. We wanted to find out about his individual wants and needs and not just what he does because it is the routine of the staff or the home.

Thomas has become less independent since moving here and because he was now more reliant on support staff it became crucial that we knew just how to support him in the right way. Thomas’s one-page profile would help us to achieve this.

Care Assistant Margaret and Thomas met in his bedroom. Margaret explained to Thomas what a one-page profile was and what it would do for him.

Thomas showed a great deal of interest in being involved and looked forward to having his photograph taken to use in display. Margaret initially spent about an hour with Thomas asking him questions about his background.

Thomas’s one-page profile is kept in his plan of care. It’s available for all staff to read. Thomas also keeps a copy for himself so he can read it and show it to his carers and visitors when they meet him. It has enabled staff to provide the appropriate level of support without altering Thomas’s regimented daily routine. Margaret regularly discusses the one-page profile with Thomas to see if it needs updating with new information

Since the completion of his profile, Thomas feels that he has more control in his life. He feels his needs are being met at a more personal level by staff. Prior to using his profile Thomas said that he was feeling that life was institutionalised but now he feels that his views about his level of care are acknowledged and listened to.

Thomas has always had good relationships with both staff and the other people he lives with but the one-page profile has highlighted new areas of his life that he has in common with people. He was in the Forces for years and he now sits at the table with another gentleman who also served, swapping stories and memories. These are new relationships developed because they know more about each other through their one-page profiles.

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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.

What can be achieved when young people are empowered?

An example of how introducing one-page profiles to school pupils in a workshop led two students to respect and understand each other’s differences and improved the learning environment for both. Logan’s story captures the successes achieved when young people feel empowered to say what is important to them how best others can support them.

Logan's one-page profile

Logan’s one-page profile

Written by Barb Swartz-Biscaro

Logan is an energetic young man from Dunchurch Ontario, Canada. He is a very creative thinker who often wants to voice his thoughts in the moment.

When Logan was in Grade 3 his mom offered to do a one-page profile workshop with his class so that the students could learn and share more information about and with each other. During three one hour workshops, Logan participated with his class. They did different activities to share what they liked about each other, what is important to them and how best to support them. They then went on to put this information into a scrapbook one-page profile. Logan’s class posted their profiles on a bulletin board outside their classroom to share with the school.

Shortly after the profiles were developed Logan began having difficulty with another student. They sat next to each other in class and Logan was too noisy for her.  She needed it to be quiet in order to concentrate.  Logan’s mom suggested getting together with the other student and her mom to iron out the situation but Logan and his classmate decided to come up with a solution on their own. They used their profiles and expanded on the information to learn about each other, have a discussion and come up with a solution. Logan and his classmate along with the two moms got together to celebrate the success.

Modifications were discussed with Logan’s teacher to make the learning environment more successful for both students. The two would sit further away from each other and Logan would have a pad of paper on his desk to write down any ideas or questions that came to mind during class time if they did not fit into the current class discussion. He would then have time to come back to them and discuss these at recess or at the end of the day.

Using the profile as a starting point for conversation with Logan, his friend and the teacher made Logan feel valued and important in his life. He had control in making decisions about how to deal with situations, what modifications worked for him or how the team could change things to suit his needs.

A life changing tool

An example of how one-page profiles can be used to improve relationships and communication. Steve felt like he was being looked after and controlled until his support team learnt from him what was most important and how to support him well.

Steve's one-page profile

Steve’s one-page profile

Written by Sarah Carrier, Lenard Cheshire Disability

Steve Nadison, 35, has lived at Springfield for a year. He is really popular with everyone here. He had a road traffic accident 5 years ago and had his left leg amputated so now uses a wheelchair. He also has an acquired brain injury and hearing loss. Steve moved here from a Learning Disability service, where he had been placed 3 years earlier as an emergency placement. The service was finding it difficult to support Steve.

When we first started to introduce one-page profiles at Springfield, Steve’s quickly stood out as a tool that would be life changing for him. Historically had been “looked after” and he really struggled with this which had led to poor communication between staff and him. He felt he was controlled by everyone. He had got quite angry and aggressive on a few occasions. After talking to him and using learning logs with the staff it was quite obvious communication and control were the things we needed to work on. It was really important that Steve’s personality shone through and staff were given a real sense of how they could support Steve and assist him in managing his money and cigarettes – which were the things that he identified as very important to him.

Steve and Kris (our Person Centred Practice champion) spent some time in his flat discussing what was important to and for him and created his one-page profile. I worked with him to talk about how he wanted people to talk to him and support him to make decisions and this information was captured using other tools.

On completion his profile was then shared with the staff team. His original one-page profile had lots of direct quotes from Steve and we thought this was important as it again gave staff a real idea of how he felt. It is used as part of Steve’s Personal Plan and the feedback from staff has been really positive. They feel they have a good level of information about Steve and are aware how to support him. It has recently been updated after his review.

Steve told me he believes his one-page profile really improved communication with the staff team at Springfield. He thinks it helped him express his feelings and thoughts in an understandable way and in a very short space of time.

Steve feels that he has support over the decisions he is able to make and feels more in control. This is a work in progress and we are constantly looking at how Steve can have more control. He feels that the one-page profile helps make others aware that he will need support to manage his money.  He summed up beautifully by saying ‘it cuts out the rubbish and gets to the point’ for staff.

From a staff team point of view I think Steve being so personable and open has really helped us learn new skills. Steve is very open to talking things through when there has been an issue over money or his cigarettes and I think this has helped his support team grow in confidence. It shows that the information that has been captured really works. Using the one-page profile to get to know Steve and what is important to him reinforces that everyone is an individual. Trying to fit people into a ‘one size fits all’ support plan doesn’t work, but celebrating people’s specific personalities and listening to what is most important to them means you can support people in a way that makes sense and that they are happy with.

Using profiles professionally with colleagues and families

An example of how one-page profiles can assist people professionally. Chris talks about how his profile has improved communication and understanding with colleagues, managers and the families he works with.

Chris' one-page profile

Chris’ one-page profile

Written by Chris

I am a Facilitator with MacIntyre’s Family Footings programme.  I support families to learn new ways to make their voices heard and exercise greater choice and control over the care and support they receive. I use my one-page profile as a way of introducing myself to new people.

I originally created my one-page profile when I was applying for my job. I was asked to bring one along with me to interview. By writing it, I felt like I could give my interviewers an idea of who I really am – not just the qualities I have that I would normally talk about on an application form, but information about my other interests and a bit about challenges in my life too. I wrote the text for the profile myself and showed it to my wife and my parents afterwards, asking for their feedback. Since then I have made a lot of little changes to my profile to keep it relevant. For instance, I have amended the bit about my running as my weekly training mileage has increased. I added the bit about supporting individual families when brokerage started to become a bigger part of my role at work.

I use my one-page profile a lot at work. I often bring copies with me to workshops I lead for parents and professionals in order to introduce the tool to them in a way that will support them to use it reflectively before immediately applying it to children they support. I give copies of it to families that I work with on an individual basis to help them see a less formal side of me straight away. I have also written another, less personal version of my profile that I can use to introduce myself in circumstances where I need to showcase my professional skills and attributes, as I realise that my personal one-page profile isn’t appropriate for every situation.

Parents and carers with whom I share my one-page profile frequently tell me how refreshing it is to have a more holistic look at who someone coming to their house to support them actually is. It’s a good way for me to introduce the tool to them too because reading my profile often causes them to get excited about the potential benefits it could have for members of their own family. When I have had chance meetings with people who have attended my workshops in the past and have seen my one-page profile, I am often surprised when they ask about my running or songwriting. Because we have shared things with each other about what is important to us, we have a better starting place for forming relationships that are based on mutual respect and understanding.

My one-page profile has also allowed me to have better relationships with my colleagues and manager. Because we all created and shared our profiles when we started in post, we all started our work with an appreciation of each other’s strengths and information about how best to work together. For instance, my co-workers know from my one-page profile that I prefer to receive information electronically, and I know that some of them prefer to receive information on paper or in conversation. We have also taken time during team meetings to revisit the ‘Like and Admire’ sections of our profiles and add things to each other’s. This has helped build our working relationships with each other and has helped me to gain extra confidence in certain areas of my practice because of how my colleagues see me.

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.

Getting others to sit up and listen

A great example of how this woman’s one-page profile has made people sit up and listen when she says what she needs.  Doreen experiences dementia and often felt threatened and confused by her interactions with support staff. They now understand her well and know how to support her in a way that makes sense to her.

Written by Gill Bailey

Doreen PicIf you do not know that you have dementia, and once the disease advances you may not be aware, what would it feel like to be approached by someone offering support? Imagine you are sitting in an armchair and a person you don’t know or recognise comes up to you and tries to stand you up to walk you to the dinner table to eat. I can only imagine how it must feel to someone with Dementia but understanding this is the first step to approaching support differently.

Doreen doesn’t know that she has dementia.  She is 79 years old and lives in a residential service supporting 44 people who also live with dementia. She is described as someone who ‘restores your faith in human nature’’.  Doreen is a gentle lady who was always at the heart of her church community until her dementia progressed.

Over the last eighteen months we have been introducing one-page profiles to people living and working with dementia. The team worked with Doreen and her husband Clifford to develop a one-page profile. They learned to pay attention when Doreen told them she was becoming frustrated and wanted her own space. From the details written on her profile they understood that this meant that she needed to be supported to find a quiet corner or to go to her room. Understanding what ‘best support’ looks like from Doreen’s perspective has made a huge difference to her happiness and wellbeing .

Obviously there was information held in Doreen’s care plan but you get a very different understanding of who Doreen is from her one-page profile. The organisation has put a lot of effort into their care plans and they do contain some good person-centred information but crucial information about Doreen was  scattered across 60 pages of mainly clinical notes and assessments plus a page of  ‘likes and dislikes’.

From Doreen’s one page profile we learn that she enjoys talking to Winifred and Kathleen and that she gets upset if she is ignored; knowing this helps staff to encourage and support these relationships.  We learn that Doreen likes to get up in her own time, between 8am and 10am in the morning. She used to be rushed in the mornings but now that this information has been shared she is left to rise at her leisure.  As well as a personal change for Doreen, this is a shift in culture from a once largely task focused organisational culture to one that is based on relationships and deep understandings of individuals. This is one of the great advances that has come out of introducing one –page profiles where Doreen lives.

Doreen now has greater choice and control in her day-to-day life. The staff that support her know how to do it well and anyone new to Doreen can quickly learn the important information about her from one single sheet of paper. For Doreen it means she isn’t as confused or frightened about where she is and what is happening to her – instead she dictates her own routine and stays connected to her life before dementia by doing the things that she always has, like baking, reading the newspaper and seeing her grandchildren.

Doreen’s story features in a newly published book by Helen Sanderson and Gill Bailey called Personalisation and Dementia available to order from HSAPress.

Birth plan using a one-page profile – “push it good”

An example of how using a one-page profile format to produce a birthing plan gave these first time parents the confidence and control they needed in labour. Robin and Adam’s story also describes the benefits of presenting important information in this way to medical staff; helping them tune in to the couple and support them in the birth of their daughter.

Written by Robin and Adam

robin and adam's birth planWe are first time parents who used a one-page profile format to write our birth plan. We had noticed that most birth plans being given out during our hospital tour were only casually glanced at by the nursing staff and we wanted to make sure that the people present at our birth would pay greater attention to ours. We had very particular requests and it was important that we delivered the information in a way that was quick and easy to read.

To write our birth plan profile, we invited our friends and family for tea and we casually shared what we thought we wanted.  They offered suggestions and ideas and it worked well because it was casual and at home.

We shared our birth plan one-page profile with our family doctor and OBGYN (both of whom loved it!). We kept a copy in our medical file and also had a copy placed on the door of our birthing suite.

During some of the more tense and scary moments of my daughter’s birth, we were able to keep all support staff on the same page thanks to our plan. This was helpful to them since they were not fumbling with a five page document which is what they often had to work with.

More importantly, it helped us as first time parents to have a team that knew how to support us best.  Naturally, we were terrified of the labour process at the time, and this enabled us to have a sense of control in what is sometimes a chaotic process.

Having our birth plan in a one-page profile format also really helped the nursing staff understand what was important to us (get her out as safely as possible!) and what support we needed as first timers (I don’t handle blood well!). Many nurses and students came up to us afterwards wanting to know more about it, and how they could encourage other parents to write birth plans in this way.

We really feel that producing our birth plan in this way was paramount in making our labour experience such a positive one. We had one nurse come in with an iPod and sing “push it good” by salt-n-peppa on a whim and we actually laughed during labour. How many people can say that?  We later learned that the nursing staff felt comfortable going the extra mile as they felt that they knew us as a couple thanks to our plan and it really helped them know how to make our experience a positive one.

If you would like to read more about people’s experiences using person-centred thinking tools in pregnancy and labour you can follow our pregnancy, parenting and personalisation blog here.