In this month's blog Gill shares how Bruce Lodge are using person-centred thinking tools with people in the later stage experience of dementia and those approaching end of life

"You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die." Dame Cicely Saunders founder of the hospice movement

One of the things we have been exploring at Bruce Lodge, is how people at the later stages of their experience of dementia may want to use their individual allocation of time and how we can make sure what we are learning is embedded into the day to day support they receive.

Where people are in the later stage experience of their dementia we must of course pay great attention to nutrition, turning, tissue viability and so on. Our risk assessments, charts and care plans accurately demonstrate our accountability to these very crucial areas. We wanted to really balance this with what's Important TO people in terms of increasing wellbeing, quality of connection, heightening a feeling of security, peace, being reached by another - we recognised that we had to pay specific attention to the fact that 'senses become more important as communication and cognition break down'.

There is a danger those in the later stage are perceived as a shell, approximately 12 of the 45 people living here are in the later stage experience and are confined to bed - the focus was on task. I was reminded of the writing of Florence Nightingale in 1860 'It is an ever recurring wonder to see .....some bed-ridden sufferer, they let him lie there staring at a dead wall;  without any change of object to enable him to vary his thoughts;  and it never occurs to them, at least to move his bed so that he can look out the window.  No, the bed is always left in the darkest, dullest, closed part of the room.'

Great attention had been paid to the physical environment in the home in general terms but not to the bedrooms people at later stage were spending a lot of their time in.

We have been exploring a specific philosophy about later stage dementia care - to move away from the culture to stand back and 'let people go.' This was something the leadership were keen to adopt and we are going to use Living Well, thinking and planning for the end of life, proactively working with family members too, in order that their contribution is captured to support this.

A key learning moment for the team was recognition that there is a misunderstanding between end of life and later stage dementia, later stage dementia is far from the end, although the physical care needs are very significant. We needed to explore how the culture shift, which has been achieved in many ways, translates specifically to people in later stage too and those approaching end of life - the distinction between the two was emphasised to supporters - the later stage experience could continue over years and so we want to ensure we continue to support people to live as well as possible.

We had learned in our earlier work with one lady that she was frightened of the dark, this was captured on her one-page profile, and so as she became confined to bed, soothing lights were arranged around her bedroom - gentle colours which very gradually dimmed and changed, heightened a sense of calmness, she appeared soothed on occasions when the sound of a small fountain was on in her room - the room was never in the dark based on our earlier learning.

We will continue to share our learning with you.

In last month's blog I shared our learning around how valuable the contribution of family members was, in ensuring we were supporting people living at Bruce Lodge to live the best possible life.

I wanted to use this blog to share some of the stories families of people experiencing dementia have been sharing with me over the last few months, whilst we have been developing the Individual Service Fund work. Many talked about 'dementia' as a condition which affects the rest of the family more than it appears to affect the person themselves - maybe not always the case but the experience of the majority of family members I have chatted with.

Paul, Elsie's husband, told me how when Elsie was still living at home with him she would ask him to nip round to her mother's house - who had been dead for years. On saying this to his wife she would look at Paul as though he had slapped her and ask with tears in her eyes, ''how can you say such a thing, I spoke to her only yesterday'' Paul describes this as the brutality of ignorance on his part.

Gloria's son told me, ''If you break your leg you sit at home and deal with it, your family have to fetch and carry a bit but no great shakes. When mum developed dementia she behaved as though nothing had changed while everyone around her had to deal with the different person she had become''.  Jim, Gloria's son, went on to explain how a light bulb moment for him, after trying to make sense of this whole ''new normal'' he was dealing with, was when a consultant explained to him that his mum's dementia was like rolling up a rug - the end of the carpet nearest to you represents the present and the other end represents the person with dementia's childhood. As we begin to roll up the rug starting from the front, the memories inside the roll are erased and lost forever and the person's reality slips backward in time. The more we roll the further back in time the person has to travel to find a point in time they remember.

My learning was that it is so important we are able to connect with and step into a person's current reality, if we are to support them to live lives that make sense to them and to prevent people from becoming lost and drifting away in a bubble of isolation because we are not joining their reality. Of course this has huge implications in our information gathering to develop one page profiles with people and their allies, our quality of listening has to be sharper than ever as we continually best guess and check out our best guesses, even keener attention has to be paid to ensure the information grows and evolves with the person to ensure it continues to make sense to the person.

It has given me a deeper understanding of the many different experiences in learning the complex language of dementia family members have, and more empathy as I reflect on George's comment - in the earlier days of her dementia his wife Doreen sat him down and said simply ''you and I together have to learn how we will dance this confusing dance together over the coming years, I'm glad you are on my team''.

I am preparing for a webinar on Progress for Providers, and one of the areas I am talking about in the 'family members' section, is ensuring that the contribution of family members is heard and acted on.

A great example of this is at Bruce Lodge, where I am meeting with each person, their family, and Lisa Martin the manager. Chris is in her late 80's and has been living at Bruce Lodge for a few years. We talked with Chris and her daughter, Lesley, about Chris's life. We learned that after retiring she had taken up swimming - this was one of her joys. As her dementia progressed she gradually gave this up. We wondered with Chris whether she would like to try swimming again, and she was keen to give it a try.

Lesley was amazed. She could not believe that we were having a conversation about who Chris is now, and who she has been. Where Chris may not be able to tell us directly about what her life has been like, family members have crucial information, nuggets of gold that can open up new possibilities. Life-story work is common in good person-centred dementia care. Working to develop personalised services means that we explore whether people want to do this now, and what this could take. Chris went swimming at Romiley baths last week and had a great time - all because of the conversations we were having and acting on what we were hearing!

We don't just learn about whether Chris still enjoys swimming, but we learn how we can support people in the best way for them. After Chris had been swimming, the staff who supported her completed a Learning Log. This records what worked about the swimming session and what we needed to do differently. This important learning then gets added to the one-page profile under how best to support Chris. One of the things we learned was that a hot chocolate in the café after swimming was something that Chris also really enjoyed.

These learning logs are also available for families to see, and many families have commented that they have much more information about what is happening in the person's life. Previously Bruce Lodge did not have a way to share information about what their loved one was doing. One family member said all the information they had before was 'slept well - no problems' without any other information about the person's day. Now they can see learning logs that describe not just what has happened but what staff are learning. Now, when new people come to live at Bruce Lodge, the staff use Learning Logs for the first 30 days to learn about the person, as well as developing the one-page profile with their family.

We are learning how important it is to hear from families' information about the person's life and history, but also to make sure that we share information back.

Families say that this gives them more to talk to their loved one about too.

Last month, I said I would be sharing our learning around how we are doing in helping people living with dementia direct their own support on a day-to-day basis. In this blog I want to update you around our progress and tell you about the difference this approach has made to Winifred.

We now have 21 one-page profiles in place at one of the Borough Care homes, therefore we know what matters to each person (what is important to them) and what good support looks like. We have taken these to consider with the person and those who love and care most about them, what is working/ not working, then thought together about what people want to change or achieve in their lives, leading to action that makes a difference.

Each of the people we have met with (half of the 42 people living here so far) now have two hours of individual one-to-one staff time each month that they can spend however they want, doing something that is important to them, where they want (in home or community). It is not necessarily the key worker but the team member best matched to the person's interests and who they choose to spend their time with.

Bruce Lodge were already aware of the importance of Person Centred Care and the staff had already had training around this, informed by the work of Tom Kitwood, Dawn Brooker and David Sheard. We are building on this to understand what matters to each individual and supporting people to have more choice and control over their day to day life.

Winifred's story describes how Winifred has taken a real role in looking after her home. Winifred is described as a wonderfully, loving personality who brightens the room with her smile. Winifred's daughters and the team recognised she was feeling lost at times and so they focused on her gifts and when were the times her wellbeing was at its best - helping Beryl the housekeeper was the resounding answer and so it became more structured so that Winifred spent her individual time with Beryl.

It has now become simply the way Winifred spends each day, carrying out the household chores with Beryl. She can be heard singing aloud as she polishes, mops, washes up and carries out the chores she did so routinely in her own home before she moved here. The increase in wellbeing is clear to see. Maureen and Bernie, Winifred's daughters, have noticed the change this has made to Winifred, in that she is happier, chatting more, using fuller sentences, is sleeping better and generally ''more alive''.

The people who live here are using their time in many different ways. Annie wants to go to Ashton market, have tea and cake or a meal whilst out. John is going out on a boat; Besse is going to make a scrapbook of her life and travels, which her daughter Barbara is helping us with. Doreen was an assistant verger at Norbury Church in Hazel Grove; she was also a member of the Mothers Union and wants to go to a church service there. Van has later stage dementia and after thinking with her and her family, our best guess is that she would enjoy going out to the park and sitting by the bowling green to have an ice cream or to have someone read aloud to her - Danielle Steel was always a favourite author.

 

 

Kerry is planning to go to Brookside garden centre and have a ride on the steam train!

 

 

 

 

 

These are just a few of the ways people are using their hours. Sometimes it's about living in the moment or having a purpose to get out of bed in the morning, or to be active members of the community. A long way from the stereotypical idea of people living with dementia experiencing neutral care!

I look forward to sharing the learning and stories of each person over the coming months.

I have worked with Helen Sanderson Associates for over ten years and one of my lead areas is exploring how we can use person-centred thinking skills with people experiencing dementia, and move away from traditional mechanisms of care, where services and professionals retain control, to a situation where people can have a say over how their lives and support looks, even in communal settings such as residential care homes. I also work with an external provider and spend time in an independent hospital for people with dementia.

Over the coming months I will be sharing with you our learning, through stories and examples, from a number of people supported by or in contact with dementia services and organisations who provide support.

David Behan, the Department of Health's Director General for Social Care, offered a challenge to Helen recently around developing Individual Service Funds, after he heard about the work she had been involved in with Dimensions via 'Making it Personal for everyone - towards Individual Service Funds'.

His challenge was:

"You have done it with six people living in residential care - come back to me when you have done it with 40 people."

We took that challenge very seriously, and in partnership with Stockport Council and Borough Care, we are working to see how far we can go with personalising residential care for forty three people who live there and have dementia.

We are trying to work at two levels:

1. That people living with dementia direct their own support on a day-to-day basis. We therefore need to know what matters to each person (what is important to them) and what good support looks like. We record this as a one-page profile.

2. That people have an upfront resource allocation that they can determine how to use. Each person will have two hours of individual one-to-one staff time each month that they can spend however they want, doing something that is important to them, where they want (in home or community) and choose who they want to support them.

Over the coming months, part of what I will be sharing is how we are doing in achieving this with Borough Care and also, how we are doing in enhancing partnership working with family members, the wider community and colleagues in health. Plus I will provide updates on 'Progress for Providers'. This is a self-assessment tool for managers to use with their staff to check their progress in delivering personalised, person-centred support for people with dementia. It compliments existing established assessment and evaluation processes like Dementia Care Mapping, The Quality of Interactions Schedule and offers a practical way to demonstrate progress against the Dementia Declaration and the Think Local Act Personal Making it Real personalisation markers.

 

I look forward to sharing our experiences and learning.