Lonely in The Lounge

No longer one size fits all

I am fortunate enough to have visited and worked in some amazing care settings for people living with dementia. I see intelligently designed spaces with access to landscaped gardens and themed walkways. Internally there are cinemas, coffee shops, bars, beauty salons and always a spacious and elegant lounge. Or three. We have certainly come a long way from the institutions and the endless dog leg corridors of the not so distant past. Not so much “one size fits all” as “never mind the size so long as we can get as many bedrooms in as possible”. Whilst austere Victoriana and refurbished chaos are in the past, there remains work to do.

I moved house two years ago. As soon as I could I made changes to the spaces in the house to suit my own needs and lifestyle. A dining room has become a study, a play room now a bedroom. We redefine what our space is for by the way that we choose to use it. Freedom of choice is easy when you live alone. In group living, and on scale, definition and harmony can be a challenge.

And this is the lounge…..

I often ask service managers and staff supporting people living with dementia to identify why a room may have become a lounge or a dining space. Who does the designation or layout of space benefit? It is an interesting question, and one that often generates great conversations and critical reflection. Do people spend their day in the lounge because the space provides opportunities for engagement and fulfilment? Or do they spend their day in the lounge because, well, it is a nice lounge?

The amount of freedom that people living with dementia have in communal care settings to define how they use their space can be a critical measure of how much the staff understand and practice person centred care and support.

Using observation to see what is really there

I have been working in a particular care setting to support a move towards more person centred practice. I have been using a range of tools including Dementia Care Mapping? (DCM?) to identify great care and support and to highlight opportunities for change. DCM? is an observational tool designed to be used within formal care settings such as care homes, nursing homes, day services and hospitals. Used successfully both nationally and internationally, DCM? has helped organisations to implement and embed person centred practice. The Care Quality Commission’s audit tool Short Observational Tool for Inspection? (SOFI?) is based on DCM?. DCM? and SOFI?  are both underpinned by the same person centred values.

Meet Tom

Tom is a fit and active man in his late 50’s living with Fronto-temporal dementia. He came to live in the care setting some six weeks ago when his previous service felt they could no longer meet his needs. Tom has recently had a hip replacement and is now able to walk slowly but independently using a walking stick. When I arrived staff asked me to observe Tom saying that they “need help because he can be so difficult”. Staff proceeded to tell me that Tom has been described as “unsociable” and “a loner” by his previous care service.

Just then Tom arrives. He is a slight man with an easy smile. Winking at me as he walks slowly and with care into the large open lounge. Tom is directed by staff to sit in the new TV space where comfortable chairs are clustered in a semi-circle around a fireplace and a wall mounted TV.

The day is off to a good start…

Tom eats his breakfast alone. The dining room sits at one end of the open lounge space and some of the dining tables have been laid for breakfast. Staff and people living in the setting gather over the next hour or so to share breakfast together. Tom’s chair has its back to the dining area. He has finished his breakfast before a staff member joins him. The staff member asks if he would like to watch a film. An ex-boxer, Tom is an avid Mohammed Ali fan and a friend of his has brought in a DVD biopic of the boxer’s life.

The DVD is put on to play and Tom and the staff member sit together in companionable silence to watch it. Tom is clearly enjoying the film. He is leaning forward in his chair and making the occasion comment to himself as the film triggers memories.

But not for long…

All is good for a short time until people finish their breakfast. Jane is supported by staff to leave the dining table and is directed to sit in the TV space. Jane requires considerable support to eat and drink and a staff member settles into the chair beside Jane to help her with her post breakfast coffee. They chat together. As Jane has been sat just a few chairs away from Tom their conversation can be heard over the film track. Tom can be seen to lean further forward towards the television as if straining to hear.

A hoover is turned on. Tom tenses his shoulders and leans further forward. A passing staff member points to the TV and shouts at Tom “Sonny Liston fight?” Tom puts his thumb up. As the hoover is turned off Tom can be seen to relax a little, but is still leaning towards the TV.

Still seats to use up?

Angela joins the group. Angela is a frail lady in her 90’s with poor hearing and vision. She requires a hoist for transfers, so settling her into a chair takes several minutes and three members of staff. She is sat a few chairs away on the other side of Tom. At some point every member of staff has had to move or stand between Tom and the television to support Angela.

Another five minutes pass before a new staff member asks Angela if she can move her chair so that “Jane can squeeze through”. Jane, using a walking frame, walks very slowly through the group, and in front of the television, to a chair at the far side of the cluster.

Three ladies are now sitting with Tom. None have expressed an interest in the film. All have needs that require care works to be present, chatting, supporting and guiding. Tom flops back into his chair but still has his gaze focused on the television.

And finally…

Nigel, Angela’s husband arrives. He takes time to say hello to Angela and the other ladies in the group before standing stiffly in front of the television to take off his coat. Nigel sits next to Angela, with his back to Tom, talking volubly to his wife about the garden, the dog and the weather.

A staff member brings drinks and stands in front of the television chatting.

Nigel continues to talk loudly so that Angela can hear him.

There is another burst of hoovering. Tom picks up his walking stick and shouts across the room to a staff member to get him a drink as “nobody has asked me what I want all bloody day”.

The staff member looks across at me and says; “See, I told you he was difficult.”

We need to step back and reflect

Does this sound familiar? I often see person living with dementia labelled as “challenging” or “disruptive”. Yet when we step back and look, look closely from the perspective of the person, we see something different. Instead of challenge we see needs not met and wants constrained within an environment that does not support their needs.

I met with staff to discuss What Worked and What Didn’t Work for Tom, staff and others focusing on the experience of people being brought together in the TV lounge. Working / Not working is a person centred thinking tool that helps to look at a situation form different perspectives to support a person to do more of what they want and identify areas for change.  Fig 1 below shows a simple breakdown of the conversation threads that emerged when I asked staff to think about the morning from different perspectives.

Establishing what works

Fig 1

What WorkedWhat Didn’t WorkFor Tom:He was watching his favourite film

For Tom:Tom had not been asked where he would like to watch the film

When others came to the lounge they broke Tom’s concentration, disturbed his peace and blocked his view of the television

For Others:They were sitting with staff and loved ones

For Others:People not asked if they want to watch the film

No one asked if they want to join Tom in the TV lounge

Those joining Tom had no interest in boxing

For StaffPeople were together making it easier to allocate staff and “keep an eye on Tom”

The TV lounge is close to the dining room, toilets and kitchen .

There are lots of chairs and space for people to sit

For StaffThe lounge crowded at times making it hard to fit hoists through

Tom becomes angry and disrupts the space

Reflecting on the day

It was interesting to hear staff question each other about why people were brought into the relatively small space of the TV lounge. It soon became apparent that it was partly because of the myth “we have to”, and partly for staff convenience. The TV lounge is close to the dining room, the toilets and the kitchen. It was easy for staff to “keep an eye” if people were group in that place. Interestingly, although staff stated that they were concerned that Tom was disruptive, they continued to sit others near him. When asked to reflect on this staff said that all of the ladies needed help, so it was easier for them to be together. Not many people used the TV lounge as it was thought out of the way. Therefore, staff thought it okay to group ladies there who needed more support.

Critical questioning and reflection help staff to question why people were brought to the TV lounge. The answer? Well, because they have a TV lounge. Tom’s meaningful experience was disrupted when others were brought to the space. Staff attributed his outburst to “his dementia”. Tom, however, was trying, understandably to express the frustrating at having his viewing interupted. Many of us, I am sure, would react in a very similar way if people had repeatedly walked in front of our favourite show.

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This small case study highlights that it is not enough to build new spaces, or to re arranging furniture to maximise space in existing settings. Creating the space and rearranging furniture is not enough. We need to rearrange our thoughts about the use of space. Critically we need to reflect on who the room, the space, belongs to. Space belongs to those that pay to live there and not to those that are paid to work there.

If you would like support to evaluate your care space, contact Tanya today: [email protected]