What do you do when something isn’t working?

Written by Gill Bailey, HSA

Gill Bailey

Gill Bailey

In our book Personalisation and Dementia Helen and I share Fred and Freda’s story. I thought it was an important story to include in this blog because it is a powerful example of how person-centred practices can support people with dementia to have better choice and control.

Fred and Freda have been married for 45 years; they are what people would call a perfect match! Fred was diagnosed with dementia in 2004. Freda and Fred made a decision to do as many of the things they had always wanted to do during the earlier days of Fred’s diagnosis. They went fishing, on four cruises and crucially for Fred went to Wembley stadium to watch his team, Chelsea, lift the FA cup.  So Fred continued to live well and spent many happy days with Freda.

Over the last two years Fred’s dementia has had a much greater impact on the couple. Fred had become totally dependent on Freda and she was finding it difficult to cope, despite having five nights respite each month when Fred was admitted to a local hospice. This was not working for Fred, Freda or the staff team who supported Fred at the hospice. Freda describes these times as the worst part of their journey together. Although she was getting a regular break from the physical demands of caring for and supporting Fred, her emotional distress at seeing him so unhappy and unsettled at the hospice was creating so much anxiety for her that she considered the option of a residential home, although that was something neither of them wanted.

The team supporting Fred and Freda decided to use the 4 plus 1 questions and asked Freda to share her contributions with them too.  4 plus 1 is tool for reflection and learning about what works and doesn’t work. It asks the following questions:

  • What have you tried?
  • What have you learned?
  • What are you pleased about?
  • What are you concerned about?

The answers to these questions lead to the ‘plus 1’ question, which is: “Based on what we know, what should we do next?”

These questions are powerful to use when reflecting on a particular area of someone’s life when they face a particular situation or challenge.

This is what we leaned from Fred’s 4+1

Tried?

  • Used end room to avoid disruption to others
  • 1-1 support
  • Night sitting
  • Sedation
  • Expert advice – bringing in consultant from the dementia clinic. Visit from Admiral Nurse
  • Male staff
  • Wife staying until Fred falls asleep at night
  • Playing music – Mozart

 

Learned?

  • 1-1 night sitting aggravated Fred further
  • If two nurses were unable to support Fred, there was no point in calling more staff in
  • Using the end room – too much activity going on because it is near the nurse station which disturbed Fred further
  • The sedation didn’t work due to the knock-on effect on Fred’s well-being
  • Expert advice (consultant/ Admiral Nurse)  couldn’t suggest anything further to try
  • Fred appeared to respond better to male staff
  • Freda staying until Fred fell asleep didn’t help as he simply woke up distressed soon after she left

 

Pleased about?

  • Experts, i.e. consultant, Admiral Nurse said staff were doing a good job and couldn’t offer any further ideas – re-assuring to staff
  • Male staff having a positive impact

 

Concerned about?

  • Staff do not have specific training in dementia care
  • The facilities/environment of the building are confusing to Fred
  • Fred gets up in the night and appears to threaten others while trying to leave the hospice and that could result in harm to himself or others
  • The amount of time nurses have to spend with Fred leaves other patients unsupported

 

Do next? Explore the sitting services from a local provider organisation, so that Fred can be supported in his own home while Freda goes to stay with her sister and gets a break from providing support this way

 

The result of doing this was that instead of going to the hospice, Fred is supported at home while Freda has a break away from home and stays with her sister.  This might seem like an obvious solution but until you ask the right questions and explore what is working and not working for someone in depth it can be hard to imagine that there are workable alternatives.

This new way of supporting Fred and for Freda to get her respite, has made life much more bearable for both of them. I think that this is a really strong example of how by applying a person-centred thinking tool to guide conversations and facilitate meetings, challenges can be identified and solutions found that can change the lives of people living with dementia.

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