This week I have been working with a family in The Ness,Teignmouth dementia day-care centre, who have just emerged from a tough week which was precipitated by 1 hasty decision. It has prompted me to write this blog, in the hope that a junior GP or doctor, who has yet to come across dementia in the community, reads this and doesn’t make the same mistake.
Memory Loss – Causation and Effects on the Family
Tim (all names have been changed) is a 75 year old man who is physically fit but over the last few months he had been showing signs and symptoms of memory loss. His family had no previous experience of dementia but referred him to his GP who confirmed their concerns and placed him on the waiting list to be assessed by the memory clinic. Meanwhile as an avid cyclist Tim continued cycling and in early December he fell (unwitnessed) off his bike and hit his head badly. He was taken to hospital and confirmed he had concussion and a bleed on the head. There was also suggestion that he may have had a seizure or a TIA as he had no other injuries from the bike accident other than the head injury. He was in hospital a couple of days and appeared to recover well and was discharged home.
After the fall his confusion, and memory loss seemed to get worse but no further brain scans or dementia referral could be taken for 3 months so that the medical team could rule out any connection with the concussion. His family had no understanding of dementia and how to communicate or support someone with brain injury. In an effort to ensure Tim’s safety they locked away his bicycle and his car and tried to keep him safe in doors. Tim found this very frustrating, he couldn’t understand why he couldn’t be independent and make his own adult decisions about his life – like cycling & driving. Understandably this caused frustration and some eruptions of anger. At this point they called me and I listened to all that had occurred and agreed to meet Tim and the family to provide them with some dementia support.
Unprepared and Unexpected – Neglect of Proper Dementia Care
The GP had been aware of the situation throughout this time. However, before I could visit in early January there was an incident in which Tim asked to go cycling and access the garage. His family refused and he became increasingly angry, more family arrived and the situation escalated; they called the GP for advice. The GP, over the phone without seeing Tim, told the family to take him to A&E possibly suspecting further brain injury, although there had been no further organic injury, falls or bruising.
It was this decision that then precipitated a catalogue of issues and a horrendous week for Tim and his family. The principle lesson from this case study is to try and avoid the need to send someone with suspected dementia (or brain injury) to A&E. That decision has to be taken very cautiously and only after a face-to-face consultation allowing the medical professional to weigh up all the factors.
In this incident Tim went to A&E after almost 4 hours of waiting, he didn’t understand why he was there and became angry and tried to leave, family stopped him and health professionals gave him a sedative agreeing he needed to be kept in hospital. Tim was placed on a trolley in A&E and his wife left as it was midnight. Unsurprisingly, Tim then got up and walked out at 2am in the morning, the hospital realised his absence too late and the police were called. The police picked him up on the streets of Exeter and he was brought back into hospital and IV drip started and more sedation administered.
Supervision and the Importance of Understanding when Caring for Elderly with Dementia
The next day started fine with Tim appearing to recognise where he was and accepting he needed to stay on the ward. He had a blood test. However, he soon got frustrated and once again didn’t understand why he wasn’t being listened to, why he couldn’t choose to leave, why they were treating him as a prisoner. Once again he became angry, difficult to handle and the team again had to sedate Tim. The poor man was in his mental context acting completely rationally, angry that people weren’t listening and allowing him to head home. The situation was not only highly stressful for the family, and for Tim but very damaging for Tim’s mental health.
The hospital, however, was now in a difficult situation as they didn’t feel he was safe at home without a package of care (even though he had been at home completely fine up to this point). They couldn’t organise that package of care and Tim was blocking a bed. They hadn’t ended up doing anything for Tim other than to give him some fluids and keep him sedated.
Thankfully the need for the bed overcame the decision to keep him in while waiting for a package of care and 4 or 5 days after that fateful decision to go to A&E Tim arrived back home.
Reflection – Patient’s Perspective and Care for Elderly with Dementia
At the core of this case study is learning empathic good communication with individuals living with memory loss. In the context of Tim’s experience and outlook he had acted completely fairly, he was frustrated because, as an independent adult, other people were stopping him from making choices and living his life. We would all be frustrated if stopped from going to work, from going outside, from using our bike or meeting friends. If you start to see it from Tim’s perspective then you can start to communicate in a way that de-escalates the situation. If the GP who advised an A&E admission had had access to a dementia expert or had teaching around de-escalation and communication with those living with memory loss then the family would have been shown how to de-escalate the situation and help Tim to live fully and independently in the context of his brain injury.
The case study highlighted how much we need more Ness teaching and we need more Ness knowledge around this disease so that families and health professionals feel confident in dealing with acute situations and caring for the elderly with dementia.
If you have a loved one with dementia and are looking for dementia support near you, then get in touch with us by giving us a call on 01626 774799, or email us on [email protected].