Inappropriate prescribing during a pandemic: dementia and antipsychotics

Summary

Back in February, the team at Patient Safety Learning highlighted how the number of antipsychotic medication prescriptions for people living with dementia had increased in care settings. 

What’s worrying, is these prescriptions can be administered inappropriately and cause tremendous harm. This is one family's pandemic story. 

Content

My Dad was diagnosed with young-onset Alzheimer's when he was 57 years old. He's now 62. For the past 3 years he has been experiencing hallucinations of some kind. He’d often talk to ‘people’ who weren’t there, or go off and ‘play’ with them. We’d join in, to make Dad feel more comfortable. 

When he was living at home with us, we never flagged these symptoms to his GP. They didn't seem to cause Dad distress, and we knew it was a symptom of his Alzheimer's. But now he's in a care home and the staff are concerned that these hallucinations are causing him, and other residents, some distress. The care home set up a meeting with Dad’s mental health team to talk about how to deal with his symptoms. 

The outcome of the meeting was to carry out a blood test to rule out any underlying discrepancies in Dad’s blood that could be causing or exacerbating his behaviour. They wanted to do this before resorting to antipsychotic medication. But, Dad wouldn’t let them take his blood. 

Despite this, Dad was placed on a high dose of antipsychotic medication. 

Why we’re so concerned

Dad’s place at the care home is funded by NHS Continuing Healthcare Funding. This took a long time for us to secure. The care home has requested multiple times that Dad has 1:1 peer support put in place via this package to help them best support him. But the NHS has continuously said no. 

Dad was placed on anti-psychotic medication when there were obvious non-drug based alternatives to pursue. The first was investigating other underlying reasons. The second was providing him with this 1:1 support. This support could have meant that he wasn’t left on his own to get as agitated by his hallucinations. 

Given he has been having hallucinations for three years without concern, any amount of time on these drugs won't actually help with the underlying cause. Dad doesn’t have psychosis. He has Alzheimer’s disease and this antipsychotic medicine won’t cure him of that. When he’s taken off the medication, his symptoms will likely return.

The medication completely transformed him for the worse. He went from being extremely mobile to sitting in a wheelchair and sleeping all day. Where he used to sing, he hardly uttered a word. He became a shell of who he was in a very short amount of time. I fear this damage is unrepairable.  

Alongside all of these concerns about him and his health, we’re also worried that we can’t do anything about it. What if the NHS decides to remove his healthcare package if we raise concerns? What if his care home no longer wants to care for him if we make a fuss? 

All of these concerns have arrived at a time where, up until a short while ago, we weren’t allowed to visit him. We had 4-minute long video calls, but these were hopeless. He’d often walk away from the screen or shout. It’s been so hard for us to see how he’s really doing. 

To make matters worse, the decision to put him on antipsychotic medication was made without involving or informing his family. We’ve had to continuously phone and ask to speak to the right people to piece together recent developments. We’ve still got no idea how long he’ll be on this medication, or what the plan is for when he eventually comes off it. 

How to fix this

• Pursue non-drugs based alternatives first. 1:1 support might involve more resources, it might cost more. But the chances are, it’ll lead to better patient outcomes. 
• Involve patient’s families in decision-making processes. They need to know what you’re doing, for how long, why, and whether there are non-drugs-based alternatives. They need updates on what’s working and what’s not. 
• Families need to know that they can voice concerns and their loved ones won’t face repercussions. This one is trickier to solve - it’s reliant on creating a safe environment. 

Patient Safety Learning would like to hear your views

We are keen to explore this issue further and would like to learn more from people’s experiences concerning the prescription of antipsychotic medications for people living with dementia.

• Are you a carer or a family member of a person living in a care setting with experience of this issue?
• Do you work in a care home, nursing home or in domiciliary care and have a view on this issue?