Part 2 of a three part blog series
Content warning: These blogs share personal experiences of depression, anxiety, suicidal thoughts, and medication side effects. Please consider your own wellbeing before reading.
In part one, I shared my experience of major depressive disorder and anxiety, and why asking for help matters, as part of raising awareness of men’s mental health through Movember. That experience has caused me to think differently about how we support people living with dementia and, more broadly, people living with mental health problems who receive support through health and social care services.
When treatment changed how I felt
As I reflect on my own experience, one thing I found confronting was the panic attacks that began alongside the depression and anxiety. They felt as though they came out of nowhere, with no apparent trigger, no warning and no respect for time or place. They were crippling. I had an impending sense of doom, could not think clearly, and was hyperventilating with chest pain. I thought I was having a heart attack, as so many people do when experiencing a panic attack for the first time. This was my introduction to the lived experience of panic attacks.
My specialist was already changing medications. Some were being reduced and removed, while others were being introduced and increased. I was already experiencing withdrawals from the decrease in the medications I was on (otherwise known as antidepressant discontinuation syndrome or in my case SNRI withdrawal). As an adjunctive medication I was prescribed was quetiapine. It was the most awful medication I have ever taken in my life, and I quickly refused to take it. The cure, it seemed, was worse than the problem. Well, it was for me anyway.
Quetiapine left me feeling completely numb. There was no sadness or joy. There were no feelings at all. I was just existing, getting through each moment without feeling connected to it. There was no comfort or peace in that experience. My coordination was affected, I felt unsteady, and I was drowsy for the better part of a day. This was all on a low dose of 12.5 mg.
What happens when someone cannot tell us
My own experience with quetiapine has made me think more deeply about its use for people living with dementia and chronic long term mental health problems, particularly those who may find it difficult to explain how a medication makes them feel. I could describe the numbness and say I did not want to take it. What happens when someone cannot easily tell us the same thing?
While medication has a place in relieving severe distress, we must also listen, understand what the person needs and consider how treatment affects their comfort, connection and enjoyment of life. At MCM, we see many people especially those living with a dementia prescribed quetiapine and other antipsychotics, often at doses much higher than the dose I experienced. My experience cannot tell us how every person will respond, but it has made this concern much more personal for me. Here are some examples from the research. These are findings from particular care home studies, rather than current national prescribing rates:
- Ireland: In six Cork nursing homes, 67% of participants with dementia were prescribed an antipsychotic, including approximately 36% prescribed regular quetiapine (Kelleher et al., 2021).
- England: Across 86 care homes, 17.3% of residents with diagnosed or probable dementia were prescribed an antipsychotic, including 4.1% prescribed quetiapine (La Frenais et al., 2021).
- Australia: Across 53 care homes, 36% of 446 residents living with dementia were prescribed an antipsychotic (McMaster et al., 2018).
- Canada: Approximately 43% of residents with dementia in an Ontario study were prescribed antipsychotics for at least one day over a year; approximately 37% in an Alberta long term care study used them. These percentages are calculated from the published tables (Dash et al., 2026; Stock et al., 2017).
- Singapore: In a study published in 2003, approximately 32% of residents with dementia in two nursing homes received an antipsychotic, calculated from 42 of 131 residents (Mamun et al., 2003).
These studies took place at different times and used different methods. They show that antipsychotic use deserves attention, but the prescribing figures alone do not tell us whether each prescription was appropriate or how the person felt.
Imagine what it must be like for someone living with a dementia or chronic mental health problems whose view of life may already feel fragmented, like a jigsaw with many missing pieces, as they try to navigate and make sense of what is around them every day. Now add quetiapine or another antipsychotic. We need to consider whether the medication is relieving distress, and whether its effects are adding another layer of difficulty.
Antipsychotics can cause drowsiness, light headedness and changes in movement, and can carry serious risks for older people especially those with polypharmacy and diagnoses like dementia. Their use needs careful consideration of benefits and risks, alongside regular review of the person’s response (American Psychiatric Association, 2016). My own experience also leaves me asking about emotional blunting and the loss of pleasure or joy. Surely there is a better way? Being quieter does not necessarily mean someone is feeling better. We need to pay attention to their comfort, connection and enjoyment of life, and to what they are showing us when words are difficult. These observations help us understand how treatment is affecting the person.
Mental and emotional wellbeing in dementia care
This brings me back to why mental health matters. I want to now focus particularly on the topic of dementia. Dementia is included in the DSM-5-TR, the Diagnostic and Statistical Manual of Mental Disorders, under major neurocognitive disorders (American Psychiatric Association, 2022). This classification recognises changes in cognition and everyday functioning; dementia also has underlying neurological causes. For me, the link is that someone living with dementia needs care for their mental and emotional wellbeing alongside care for their cognitive and physical needs.
A diagnosis of dementia does not take away someone’s need to feel safe, connected, understood or able to experience joy. Nor does it take away the need to recognise and appropriately manage other mental health problems. Dementia and conditions such as depression and anxiety are distinct, but they can occur together, and each needs support that responds to the person’s needs. Depression, anxiety and distress should not simply be attributed to dementia. They still need to be recognised and responded to. If I needed people to notice my decline, listen to me and help me find the right support, surely the same matters for someone living with dementia, especially when they find it difficult to explain what they are feeling.
We need to see a shift in social attitudes towards mental health, and in how we recognise and respond to emotional needs in clinical and care settings. Advocacy and organisations such as Movember are helping to change the narrative by increasing awareness. My own experience has reminded me why that work matters, both in our own lives and in the lives of the people we care for.
I’m going to finish this series as I started, with a quote. Joy reminds us in the movie Inside Out 2, “Every bit of Riley makes her who she is” (Mann, 2024). Every part of us deserves understanding and care, including the emotions we struggle to express, because mental health matters for all of us regardless of any diagnosis we have.
Mental Health Matters.
Managing Director, MCM