Is there a right time to start anxiety medication for dementia? There will come a time when this question needs to be asked. Every person with dementia and their caregivers will wrestle with this and maybe ask themselves multiple times as the disease progresses.
The right time to give anxiety medication is going to be dependent on the individual. The right time will be when their behaviour is causing so much distress to THEM that it can’t be managed by other forms of therapy. You’ll also have to balance the risks of side effects against the benefits of taking any new drug.
You have probably exhausted all other options if you’re thinking of medication like trying to understand the cause or using non pharmacological treatments for agitation or distress .
Technically it’s often referred to managing the Behavioural and Psychological symptoms of dementia (BPSD). Anxiety, distress and agitation are examples of these symptoms but it’s not limited to that. They can also include things like depression, apathy, hallucinations and more.
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Mum’s dementia is causing sleep disturbances for her. I’ve learnt from Admiral Nurse Kerry on how to use other forms of therapy to handle mum’s sundowning and night time routine. I’ve learnt to ensure she’s sufficiently stimulated during the day and that has resulted in the sleep disturbances being reduced and now this only happens once or twice every few months.
But, this weekend Mum experienced a night of distress that came out of nowhere. She had settled early, had fallen to sleep and then suddenly woke up hallucinating just after midnight.
I wrote about our experience of that night in my journal.
‘Mum is awake and anxious and talking about things that are not in her room’
She’s talking about being on a bus and asking for the driver to let her off. All whilst lying in bed in the dark. She is fully immersed in her truth, and I have no understanding and no way of helping her. I try to explain that she’s in bed. It takes a long time to get through before she understands where she is and she comes back from her hallucination, calms and settles to sleep again. Within a few minutes, I can hear her calling out again, this time for family members to help her off the bus .
This time, I try joining her reality and asking the bus driver to stop so that we can get off. Again I manage to calm mum for a few minutes, but it’s a rollercoaster of a night as every few minutes something sets her off again. She is pleading with the bus driver and I can hear in her voice that she is also scared. I don’t understand what’s going on so I go back and keep settling her. We talk for a while and I sit with her until she starts to dose but not fully asleep. Within a minute her eyes are open again and her stress and anxiety increases. She’s not relaxing so I make the decision to give her a sleeping tablet prescribed by her doctor.’
A few months ago, mum went through a similar night and stayed awake shouting and hallucinating all evening. I contacted our doctor and explained the situation and he prescribed a short term supply of 7 tablets for mum as they are addictive. He also made a referral to our Memory clinic for further advice. As much as I dislike using pills I thought this was the only option this night as it was after 2am and mum was showing no signs of settling and her distress levels were increasing. I thought this is going to go on all night so I gave her first sleeping tablet ever.
It didn’t work, mum continued hallucinating and stressing until after 4am. Now, she believed there was a bomb under her bed. She was scared for my safety! She was still talking so animatedly and still scared at 4:30am so I made a decision that she wasn’t going to go to sleep and decided to take her downstairs.
We went downstairs and watched TV. Mum’s anxiety had reduced but she was as like an energizer bunny she just kept talking and talking. We eat breakfast at 5am in the morning and then mum stayed awake for the whole day.
I don’t know how she stayed awake. She must have been exhausted but her energy levels were so high. Something in her brain wouldn’t switch off. I was worried of course that she hadn’t had enough sleep and it would increase the frequency of her headaches.
But, instead Mum slept through the next night and the following day her body clearly hadn’t recovered as she dozed throughout the day. So we went to bed even earlier that night. We both slept over 12 hours that night. So that was a bonus for me – getting my first full night of sleep in years!
We recently had a telecon meeting with the memory clinic. This was our first meeting with them since our disastrous appointment for mum’s diagnosis in 2012. Our doctor referred us back to the memory clinic to see if they could help after mum’s last all nighter.
After describing the issues all they suggested was another pill. The doctor stated that the natural progression of the disease means sundowning issues inevitably get worse. The only option was to revert to medication to avoid agitation and her being upset. She understood that distractions and other methods of reducing agitation are limited now due to covid e.g going out, meeting family etc.
It was a disappointing call as I’d hoped for interventions that involved not using drugs. I refused the drugs, as per mum’s wishes, but wonder now whether I did the right thing.
The doctor was very good in respecting our wishes as she stressed that they were only there to help and at the end of the day we knew mum best. However the disease would progress and as such mum may need some medication on top of the sleeping tablet that the doctor had already prescribed in the future.
Am I doing the right thing?
Mum during her lucid period stated that she didn’t want to be on any more drugs. She didn’t want her mind to be altered in any way as she believed as a devout Muslim that she should stay her true self.
But years later, her dementia has progressed so now the question becomes what really is best for her and am I doing the right thing? When I speak to her about it now, she still refuses.
A few weeks ago, I watched a video of a Mind & Voices zoom meeting with people living with dementia talking about benefits of early diagnosis. It started with them talking about just being offered a pill after their diagnosis and no further follow-up. They talked about the lack of emotional support on how to deal with the diagnosis.
One person, Wendy Mitchell, talked about drugs as a lifeline. She wrote the memoir ‘Somebody I used to Know’ about having young onset dementia. She discussed changing her doctor because he insisted that Donepezil didn’t work so why was she bothering to take it? Her response resonated with me. Wendy said
” if that was the only lifeline you had would you not take it?”
So am I doing the right thing by not pushing for drugs that could help mum’s behavioural symptoms?
I also need to take account of the fact that she currently takes 15+ meds a day. These are difficult enough for mum to take already. On top of that she has a vitamin shake, a probiotic drink and a laxative drink every evening. The problem I have is mum is already palming tablets or holding them in her mouth and then spitting out when I’m not looking. So are more drugs going to be accepted? It’s a lot to think about!
So the right time to start anxiety medication for dementia?
Medication is only one part of the care needed by someone with dementia.
So when is the right time to start anxiety medication for dementia for us? When you decide to use medication, increase or change medication it has to be done when the time is right for them.
I don’t think moving to stronger anxiety medication is right for mum yet. We have tools to work through most cases of sundowning. I think for the time being the best approach is to talk to the doctor and to increase her sleeping tablet dosage. This was the first time we had used them and they obviously didn’t work. So that’s are our approach for the time being taking account of all the factors!
Let me know if you have gone through something similar or have decided to use drugs for yourself or help a loved one deal with the behavioural symptoms of dementia.
Until next time – bye for now.