Emotional Response of People Living with Dementia

I was recently commissioned to work with a man aged eighty eight and living in a residential care home. Jim (not his real name) had been swearing and shouting at staff to get out of his room since he moved in six months previous. He was not eating nor drinking enough and was losing weight rapidly. Jim would also oppose support with any form of personal care. Jim had moved into the care home, not of his own choice but because he lived alone, had not been looking after himself and would not accept that he needed care at home. The decision was made in his 'best interest'. His reality was different, Jim could take care of himself very well thank you. From always being clean shaven, Jim had grown a long beard and lost a significant amount of weight. His only other physical health issue was a large, inguinal hernia to his groin for which he was prescribed Paracetamol.  

After six month in the care home, Jim was still not accepting of care and was not eating or drinking enough. He continued to lose weight and refused to take any pain relief. There was little life story information on Jim who had no family. He would spend all day in bed and when woken for breakfast or other meals and personal care, he would become annoyed and swear at staff, telling them to get out of his room. Some care staff became wary of Jim and this would have a significant impact on building rapport and a meaningful relationship with him. Jim was more accepting of care, eating and drinking after he had woken at around 5 to 5:30pm, although, he would only eat small amounts of cold food. Interestingly, Jim had alluded to the fact when getting up that he needs to get ready for work. I need to add that this particular staff group were excellent. They were trying hard to understand and they were ready and willing to care and support Jim. They just needed some direction and guidance.

The local authority were not happy with the care home, insisting they were not meeting Jims needs. Their recommendation was that Jim needed (EMI) care; a term I thought had long since disappeared? This would mean another move for Jim in a short space of time and this could be extremely detrimental to Jim.

My objective was to support staff to understand Jim's reactions and maintain his current living arrangements. I could not see what another staff team could do differently. When I am working with an individual, I take a very broad approach both in terms of staff behaviours and in this case Jim's reactions. I will also sift through the file and notes in detail and record anything I can find where there is a link with emotional memories. My initial hypothesis was that staff seemed to be imposing their 'normal' daily routing onto Jim who would then communicate his annoyance at this? There was a 'stand off''.

Jim had a strong pattern of sleeping through the day and being awake at night; sometimes all night. Staff would attempt to wake him for breakfast and put his TV on. This disruption was not welcomed as Jim was trying to catch up on his sleep. I also noticed that Jim's curtains were letting a lot of light into his room. Having read in his file that Jim liked to sleep in total darkness, this was at odds with reality. Staff thought that Jim worked nights before he retired and this was to be a significant clue to Jim's reactions. True person centred care should take account of how Jim likes to sleep and of the strong patterns and routines that he had. This requires a staff group who are adaptable and able to change. It also requires flexibility to deliver a purest person centred approach.

My hypothesis was gaining momentum but I needed much more information before it could be confirmed. This is the very reason why detailed life stories should be completed alongside the initial assessment, before people move into a care home. The life story should contain personality traits and both positive emotional experiences and emotional traumas experienced through life. For most of us, we put our trauma memories 'to the back of our minds', in fact that exactly what we do. They get tucked away in a small organ in our Brain called the Amygdala which is close to the Hippocampus (our memory store). For those of us who have good cognition, we can control those emotions to some degree. Without the cognitive ability, these trauma emotions can surface, usually at their worst case scenario. For people living with dementia, they feel the strong emotion but cannot provide a context for it. It is therefore up to our precious staff teams to find the solution in order to provide support. Distress reactions are inevitable and my role to work out the context of these emotions so staff have the best chance of success in providing care and support.

Where would I start? I decided I needed more information so found Jim's previous address via 192.com the tracing web site. I was also able to locate his closest neighbours so off I went to knock on doors in an attempt to unearth more information about Jim. Jim had lived in a Bungalow within a small, rural village where people had a good knowledge of each other. I spoke with two neighbours. The first knew little about Jim but said that her other neighbour knew Jim well. The key learning about Jim's life included:

• H was married to S but they did not have children.
• He worked shifts at a local Power Station that was demolished in 1996.
• His wife would help a neighbour and collect their children from school. On one winters day, S went to collect the children, she slipped in the snow and fractured her ankle. Tragically, S also developed a blood clot and died.
• He never closed his front blinds and according to the neighbour, when Jim retired, he could be seen playing the stocks and shares market into the early hours of the morning.
• Jim's bungalow looked unkempt but in his garage was his pride and joy, a Ford XR2i. The car was apparently in mint condition. I was informed that whenever Jim got into his car and drove away, Classic FM could be heard.
• I was also told that after his wife died, Jim became a loner and a bit of a recluse. From his diagnosis, Jim did not look after himself. He would not accept home care and his beard grew and grew. The neighbour would help Jim with shopping but it was when Jim had utility debts with the threat of disconnection that Social Services took control.

He was not used to the number of people trying to wake him and prompt him to eat. This, off course was all done with good intentions. Good dementia care means, we may need to abandon what we think is the right thing to do and follow the person's lead. Our thinking needs to be innovative and creative. We become a detective, solving the story.

Not a lot of information you might say but when we start connecting it together, it becomes powerful, life changing. Indeed there was a strong connection to why Jim slept during the day and why he became so annoyed. Its was like forcing a square peg into a round hole as staff sought to make Jim 'fit' the care home routine. Nothing was known about his favourite music and this could be the transforming key. Jim's good emotional connection seemed to be between Classic FM and his car. There may have been some assumptions made between Jim's unkempt state and the type of music he liked?

The plan I devised was made up of a number of sections: 1) Jim's story, 2) Jim's reactions or behaviours, 3) The frequency and severity, 4) Pro-active or prevention strategies, 5) Active strategies, 6) Reactive strategies and 7) Recovery time strategies.

It was the proactive strategies that would use much of the information above and these included:

1. Conform to Jim's routine of work. Check he is ok first thing but don't attempt to wake him. Avoid being tempted to put his TV on as this will distract him from his needed sleep.
2. Purchase curtains that keep his room darkened without the intrusion of light.
3. Jim should have a clock, calendar, date and day in his room to help him understand time and place and to orientate him. This is particularly of benefit to Jim's routine.
4. When Jim wakes, use the language he understands. His reality at this point seems to be focused on work. Ask him if he wants to get ready for work and have something to eat and drink before he goes. This is validation. We accept where Jim is in his reality and enter that reality. Jim's short term memory is poor, so what is said is forgotten quickly but in that moment, it means a lot to him.
5. Temp him with a hot meal. All Jim is eating so far is sandwiches and cold snacks. Find out what his preferences are. Provide finger foods during the night. Pack sandwiches/finger foods into a ‘Bait Box’ as though he is at work. Use a plastic container for cut up veg and or fruit which will support both nutrition and hydration.
6. Jim has enjoyed a can of beer occasionally. He was offered another can by one carer and he stated that "one was enough". This should become consistent across care staff to provide something he likes and to improve his hydration.
7. Jim is a lover of Classic FM. I purchased a radio and head phones so he can listen to his music. There are some powerful connections  between people and music and as we have just identified his taste, I am keen to see the results. It is possible that Jim will eat and drink more and that he may allow staff to trim his beard and provide personal care?
8.  Staff should not impose things on Jim as this tends to agitate him, particularly if he believes he can do everything for himself. Always transfer choice and control to Jim. He has lost so much and the staff group have to start giving him control over his life in whatever and however they can.
9. Focus on Jim's non-verbal communication to precipitate a negative response. Observe his facial expression, body language and when his tone of voice begins to change. This will provide an indicator for how he may be feeling e.g. happy, sad, content etc.
10. Jim's car was a White and Blue Ford XR2. Print pictures and use them for reminiscing. Use an IPad to show him U Tube video’s. Access DVD’s of this car type, preferably in white if possible.
11. Jim worked at Elland Power Station. It was demolished in 1996 with Jim being around 67 years of age which means he is likely to have retired before it closed? Use pictures and U Tube footage to see how Jeffrey responds with reminiscence?
12. Jim was keen on playing the Stocks and Shares markets and would stay up late into the night/early morning indulging in this. Make this a topic for conversation and if there are programs on TV or DVD’s, he may enjoy watching. There may be a magazine that can be ordered.
13. If Jim responds well to seeing pictures of the power station, his car etc., these could be printed off to personalise his room. This may provide a sense of home?

At some stage, Jim may begin to experience the emotion of his wife’s death. This will required careful and sensitive management. It may be his responses are sadness and crying but may also be anger as he may well go through anothet grieving process. The information her may support Jim if this does occurr. In the mean-time the staff team should maximise the postive emotions and experiences of Jim's.