enriching the environment for people with Down syndrome living with a dementia

By 50, up to half of people living with Down syndrome will have dementia. People with Down syndrome have a high likelihood of developing dementia as they age. People with Down syndrome have extra material for chromosome 21, and some of the genes associated with Alzheimers disease are on that chromosome. By 50 years of age it’s been estimated that up to half of people with Down syndrome will show signs of dementia. Nowdays with better healthcare, people with Down syndrome are living longer so there are more people living with down syndrome and dementia. This presents new challenges for staff in the intellectual disability sector to respond to the unique needs of people with a dual diagnosis

Person- centred care is the gold standard for care

Meaningful activities are an essential part of quality care When Phinney asked people living with dementia about what made activities meaningful they said They give pleasure They reinforce their sense of themselves and what they can do And they help them interact positively with others And you can see how closely intertwined that is with person centre care

The PIE process facilitates staff development The PIE process was developed in the United Kingdom to facilitate dementia staff development in person-centred care

Person Interaction Environment The PIE process focusses on the experience of the individual residents PIE stands for Person, Interaction and Environment This process begins by observing how enriching or depriving aspects of the residents’ experience are 1) staff using what they know about the Person to make their care specific to them, 2) the quality of the staff Interaction with the resident and 3) the effect of the physical Environment and organisation of care on the resident. Each observation lasts for at least two hours and the two observers make detailed notes about the different examples of person centered care, missed opportunities and neutral experinces that they see for each of the residents

   The observers provide feedback to the team, focusing on the experience for the residents rather than critiquing individual staff. The aim is to recognise opportunities to improve person-centred care in day to day practice. Feedback enables staff to reflect on the findings as a team. Then the team are helped to set their own specific goals to improve care, and then they are given time to put them into practice Then another round of observations take place, and the cycle starts again       

METHOD The project we want to share with you today took place at Hohepa Canterbury. Hohepa is a community for adults who have intellectual disabilities. Hohepa’s vision is for the residents to be living, working and taking an active part in community life, so that ‘every life is fully lived’. The focus for this project was Rose Cottage, a residential care household environment for people with intellectual disabilities living with dementia. The cottage was set up in 2016 in response to a number of residents with Down syndrome requiring additional care due to the development of dementia. The cottage has four residents, with two staff on at all times during the day. We engaged with Rose Cottage to help them through the PIE process

With the added bonus of introducing activity resources

We started with a hapu team meeting to introduce the team to the Project and help them to develop a vision of care for the cottage Then we conducted the first set of observations to gain a baseline Following that we had a team meeting to provide feedback and reflect on this and also to identify goals Then after a few weeks there was another round of observation to see whether things had changed This was followed by a team meeting with feedback and reflection, but this time there we also introduced the activity resources Then there was a final cycle of observation With feedback and reflection at another meeting and this time we set with long term goals

RESULTS So what did we find?

We found the PIE process was a really effective way to engage staff – they were really into it! In the first team meeting we asked staff about what they would see in a ideal person-centred cottage and here’s what they came up with. We used this to shape the feedback we gave.

At baseline, the balance of resident experience was neutral We found the PiE process to be a fabulous clinical tool to really observe the experience of the individual residents In the baseline observations there were pockets of person-centred care where the team interacted in a kind way, laughing and joking with the residents when they were doing a task with them but the balance of the resident experience was neutral and residents were left without interaction in a chair for periods of time.

 Even at baseline a real strength of the team was that they knew their residents and used this knowledge in their interactions

The second set of observations revealed positive changes in residents’ experience So after the feedback and reflection session we went back after a few weeks to see how things were going. This second set of observations revealed positive changes in residents’ experience

     Residents were seen to smile more had more time engaged in activities than previously and therefore less time without stimulation or engagement. staff or visitors walking past residents were more likely to acknowledge them and there was sometimes encouragement for the residents to interact with each other. staff were more likely to encourage them to do what they were able to. There were still extended periods of time without engagement and engagement of the residents still tended to be around tasks. We also didn’t always see the team being present in the moment– so there were missed opportunities for staff to take things at the resident’s pace and really focus on engaging with them,.  

In the final observation, residents initiated more interactions, had more activity in their day and had more smiles So after another round of feedback and introducing the activity resources there was a final set of observations In this final observation, residents initiated more interactions, had more activity in their day and had more smiles

     So, the residents experienced a more person-centred approach to their care in the last set of observations. Engagement lasted longer, producing more expressions of pleasure, for example the residents were smiling, laughing and making positive comments or noises. There were markedly more resident to resident interactions, that were at times initiated by the residents themselves –we had never observed this in the baseline observation More moments of staff being present were observed, which was characterised by patience, repetition, eye contact, and good pacing. Staff were using not only the activity resources but also other creative tools of engagement. The staff generally appeared less task focused Staff gave good explanations of what was going to happen more often, and they repeated these explanations using simpler language. Staff included residents in everyday tasks such as one resident peeling potatoes for dinner, and residents were offered more choices There was generally more consistency in manner from staff toward all residents – even with those residents that were more likely to push people’s buttons! Residents were checked on more regularly and staff helped residents change chairs more often to prevent pressure areas and discomfort.    

Self-efficacy When we asked staff to rate their self efficacy, each of them said it had increased – by the end of the project they believed more in themselves, they believed they could successfully engage with residents.

WHAT WE LEARNT

We can make a difference The team wanted to be doing a great job, and they wanted the residents to be happy and have good lives. We were able to support them to do this.

THE PIE process rocks! The PIE process when used well is enormously useful. It’s non threatening because it is strength based and not judgemental. The staff are fully involved throughout from setting up the vision of what is important to working out how they want to get there.

But it’s NOT a one-off We saw amazing changes – but you can’t just sit on your success and expect it to be embedded. It’s NOT a one-off you have to keep putting in energy to keep the gains. To re-energise, make it fresh, embed it and have everyone, new staff and old staff on board across time– to make it a real and living culture of care

Resources + Education Questions Enrichment