Dementia. 2020 | jaspar rogers

A new culture

Dementia care

The immediate problem when working in a care home for people with dementia, especially later stages dementia, is that the people you are designing the service for have either lost their ability to converse verbally or are not mentally sure of their reality / environment. This makes cooperative design methods, that engage the user in the process of designing their own care experience, challenging, but I found that through observation and immersing myself in their realities, that I was able to listen to what they weren't able to tell me directly.

Care Homes have remined almost unchanged for around 100 years. Could it be that this lack of communication has resulted in them being forgotten about?

Initial findings

When you ask, What is dementia? Many people will tell you that it’s a degenerative disease that effects 1 in 3 people. That it causes a variety of memory ailments, depending on the type of dementia, that it hinders the persons ability to communicate, alters their perception of reality, can cause hallucinations and repetitive actions. But how does it feel to have dementia, to be defined and dehumanised by those labels? Although physical care needs are addressed very well, I found my focus of this project to address residents emotional needs. My recognition was the separation of emotional memory from cognitive memory and the implementation of tools and techniques that can help make a person feel valued, special and joyful.

When you ask the question "would you like to live in a care home?" the answer is invariably no: I set myself the starting point to ask "why" and came to three more questions: Why do residents have nothing to do, why do care homes not feel like home, and why does it seem like your freedom is taken away?

There are so many personal stories for how these changes affected individuals / why certain changes were made, that I would love to share, because it is those specific situations that make the difference to someone's life and make the work meaningful. If you would like to hear some specific examples then please get in touch and I would be happy to share what worked and didn't work and why.

There were three main problem area's that I identified in my first phase of research

1) Nothing to do

2) controlling Language

3) Routine

1) Organised activities, multiple cups of tea, and lot's of old films, but nothing to do. Why would you bother getting up if you have no sense of purpose? Many people would spend their day staring into space or looking out of the window, my presence alone was quite an object of interest.

2) What was often labelled as being stroppy or aggressive, irrational behaviour, was commonly induced by controlling language. Statements that told residents they couldn't do what they wanted but should do what they're told. Naturally, this is confusing to someone who believed they were somewhere else doing something completely different. This also corresponded with trying to argue with a resident: using reason and logic was futile and would only make the resident feel stupid and confused.

3) The controlling language was not the fault of the staff, they had a rigid and routine list of jobs they “had” to do at specific time. But, this "logic didn't compute for many people in the home, this made the staff stressed and then that stress was passed on to the residents through body language and tone of voice.

Second hand research

Second hand research was vital to understand the psychological condition of dementia and give context to my observations. This allowed me to engage with the residents in a more homogenous way, developing friendships with many of them due to gaining a deeper empathy for their experience.

Many academics, researchers and dementia related specialists were already promoting similar ideas for human centred care that looks after an individuals emotional and mental well being, as well as their physical health.

This research validated and helped me build upon my observations and because I spent the majority of each week working with both staff and residents, I was able to see these concepts manifest in real life. This gave me great insight into where and why certain problems occurred and allowed me to sperate myself from the dogma of care and make critique from the vantage point of knowing speculative alternatives.

The staff were sceptical and dismissive of change

That perspective is what I needed to focus on.

However, the learnings I made through this process inspired a number of experiments that tested and proved the aptness for these methods, specifically within the context of this home. This provided me with relevant examples that helped to instil trust, giving my workshops credibility.

Naomi FEIL,
tom kitwood, sally knocker, bupa, dementia care matters.

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Objectives

freedom

purpose

Well Being

understanding

safety

Belonging

Workshops

Human centred care

communication techniques

understanding language

self reflections/ team building

Friends and family

Later stages

activity & occupation

Along with Latasha from head office (who was a sort of collaborator and project overseer) we established 8 area's of opportunity to improve, and a coinciding vision with values that would be the cornerstones of their new culture of care. I then made a presentation that detailed this vision to a select 5 senior managers and was given 7 workshops (in the left margin) that I performed 3 times each. Working with the staff in designing how this new culture of care could work.

Two slogans from dementia care matters that we used to characterise this change were:

A home that feels like home

Doing with, not foR.

The second purpose of the workshops was to create a safe space to discuss topics such as the staff’s feelings and for me to listen to and address concerns. Because many of the changes we were looking at were not radical ideas but rather, bringing care back to basics. (Breaking away from the dehumanising “rules” that aimed to safeguard residents by isolating them, limiting them, and controlling them). The staff often expressed that this new approach is how they wanted to work but couldn’t because of systematic issues. Hence I took on an important role in problem navigating: a confidential bridge to connect the concerns raised by head office with the barriers raised by staff.

Outcomes

The workshops were a success to the extent that all (bar one) staff members were onboard with the culture change and had began implementing the techniques we'd worked on during this period and were able to report back, in their next workshop, with what worked for them and what didn't. This ability to share ideas and have the flexibility to design their own job through the workshops seemed to be empowering and motivating, especially when they saw the fruit of their efforts. Hearing success stories and seeing the changes around the home and in residents behaviour was exciting. But this wasn't enough.

Unfortunately, and predictably, This was all good when they were fresh from the workshop and motivated to try things out for the next one. But truth of the matter was that it's too easy to fall back into old habits, turn on auto pilot and repeat the routine that was well rehearsed.

Creating time was one of the hardest and most important challenges and it had more to do with mentality than grand changes.

The belief that there wasn't time to do anything new was the biggest restraint on the staff but when put under reflection, it wasn't a lack of time, but pressure from seniors that made many people feel like they had to be busy and that there was more important things to do than spending time with the residents; like "organising cleaning buckets" or "cleaning wheelchairs". But with the reorganisation of priorities, the introduction of digital care plans, and the recognition that these things could be done at the point of care, freed up quality time that could be spent more meaningfully.

Things that did change:

Lunch We made lunch into a shared experience for staff and residents to enjoy their meal and company. Similar to how many residents had spent this time with their families in the past.
Breakfast bar The success of this was to give the more able bodied residents the ability to make their own tea but also to get rid of 'meal cards' that dictated what the resident would eat, giving them more freedom to make their own choices.
Tea Round getting rid of the institutional tea trolley and making the experience more individualistic with staff spending more time with residents due to the care plans being moved out of the office and into the lounge. now tea and biscuits are brought individually, or they are going to the breakfast bar to make it together.
Attitude the workshops did have an affect in respect to body language, the manner in which a person is approached, and making the effort to always acknowledge someone instead of walking past, even when in a rush.
Personalisation more tailored care plans that included the comforts, attachments, interests and pleasures of each resident that made interactions at the point of care more compassionate and meaningful, denoting the feeling that the resident is valued and appreciated by the carer.

At the end of our series of workshops I received a few requests for a summary of what we had worked on so I used some time in lockdown to make a staff handbook

Staff Handbook

Activities

The impromptu resignation of the activities coordinator put a lot of pressure on guaranteeing resident engagement and gradually over a period of months we achieved an attitude to care that gave staff the time and lack of judgement to be with residents in the afternoon, when they were more in need for activity, to do meaningful activities with purpose such as folding sheets or making sandwiches together. Helping residents with hobbies they used to enjoy such as gardening or knitting. Or, to simply do silly things like dances or balloon volleyball, even playing with snapchat filters, but the main point was to know what each residents unique activities and interests were and facilitating them whilst considering their level of dementia and physical ability.

Implementation

Putting idea's into practice meant returning back to the home to take on a project manager role where I coordinated the new physical design of the home and the systematic management of people, for which I used formats they were already accustomed with to make the transition easier. Managers also mentioned that my presence acted like a trigger for staff so I designed some posters that could do the same when I left.

We recognised that change was going to take time, with different people adapting to change better than others so we devised a timeline of when certain goals should be reached.

This time also gave me the opportunity to watch how devices such as the breakfast bar were being used and whether the residents were being invited and involved in these tasks.

Decorations, such as the above picture, were also used to invite residents to join in with home maintenance because this was something that a lot of them spent their days doing before, so if they were in the mind space of thinking that they should be cleaning the house, they were facilitated to do so. Similarly for various other professions, the tools were beginning to be provided to give back some routine and meaning to peoples lives.

To make these activities and decorations personal we called on help from family members to gain more insight to each persons life.

The corridors all looking the same caused a lot of confusion especially for one resident who used to take a lot of cruises, these narrow corridors triggered her to often feel like she was back on a boat and lost. Having these colours broke up the space and improved the mood as the bright colours also made the corridors seem less narrow, something that often caused the residents distress.

The walls were repainted to make navigation of the home easier, less confusing/disorientating,

and following a theory that people with dementia respond better to brighter colours we created simple games for them to test which colours were most effective. Personalised decorations were introduced that were either tactile (used to stimulate senses) or rich with content that reminded residents (and staff) of their diverse and fulfilling lives. Memory box's were used next to each persons doorway to personalise that area, simultaneously triggering the knowledge of which room was theirs.

Notice the corridor below is the same one from the top of this page.

(Hover to view)

Work is still ongoing in the Home and restrictions caused by Covid were contrary with this approach as I was advocating close contact however we started filming a promotional video that I will finish when restrictions lessen.