Dementia is a gruesome disease.
It robs you of your dearest memories, your personality and sense of self, your vocabulary and communication, function and what you can do, and life. Unlike cancer, there's no drug or surgery or intervention that we have which can prolong life/delay death by even one day.
Broadly dementia is said to cause both cognitive problems (changes in memory and thinking) and non-cognitive problems (behavioural and psychological symptoms of dementia, BPSD).
Cognitive changes can be managed, fairly successfully, most of the time. Non-drug strategies (practical support, carer interactions and psychological interventions) make a huge difference. I'm not amazingly sold on Cognitive Stimulation Therapy as the bees knees (that NICE advocate in their clinical guideline CG 42), but a host of simple practical suggestions can help non-demented and demented folk alike, like these. Acetylcholinesterase inhibitors have significant benefits to most folk with Alzheimer's Disease (and related dementias) most of the time. We can't stop cognitive change over time, but we can manage the symptoms of it and the impact of it, fairly well, most of the time.
What's much more problematic is managing the non-cognitive BPSD part. Wandering without purpose day and night, mood changes and frustrations with anxiety or utter unconsolable despair, shrieking and screaming in public, disinhibition trying to kiss strangers and masterbating in public, suspicion of partners/carers with consequent hostility and violence. Much harder to manage than cognitive changes such as forgetting a hairdresser's appointment.
Our weekly carers' support group rarely focuses on cognitive problems, mostly it's BPSD that takes carers to their knees, it's BPSD that they need help managing. Without the intensity of the BPSD they miraculously could (and usually do) cope well in truly dismal circumstances.
Delusions, with paranoid persecutory thoughts, mood disturbance and seemingly irrational beliefs, how can these be managed?
In America the FDA have said, "Antipsychotics are not indicated for the treatment of dementia-related psychosis."
This can be harsh.
You can have psychosis, this can torment the patient and torment the carer, you've antipsychotics to treat the psychosis but you don't. Kind of galls me, that.
The reasoning behind the FDA's reticence to entertain antipsychotic medication in dementia care is sound. It's not homeopathy, it's proper medicine that has proper benefits but also proper risks/side effects (like ramping up risks of a stroke in the next year by 2%). The medications can cause significant harm.
Originally work was mostly focussed on risperidone and olanzapine since there was sufficient research to evidence consequences of use in dementia care (both good and bad), with such medication evidencing great benefit as well as great risk. Subsequent research shows older adults in care homes experience similar risk from which ever antipsychotic drug you use. They all have side effects and can cause harm, it's just some are more likely to cause a heart attack, others more likely a stroke, but the over all risks are pretty comparable.
Knowing that the medication has a modest risk:benefit ratio and can cause significant harm, such medications need to be carefully considered and used judiciuously. Careful consideration of what the issue being treated is, what the target symptoms are, what the level of symptom burden is before treatment, what it is after introducing medication and is there objective gain through the medication's use? The time necessary and sophistication of assessment, reasoning/rational prescribing practice, carer input/management of frequently incapacitated adults (with respect to the treatment decision and valid consent), initiation, titration and evaluation of medication is usually outwith the scope of Primary Care or acute hospitals and sits better within mental health services for older people.
With that in mind, and seeing the grim consequences for patients and carers of not treating BPSD and dementia related psychosis, I'm increasingly aligning with this view, ". . . that antipsychotics may be justified using a palliative model."
Evidence Based Medicine (EBM) informs the discussion but to then elect to use antipsychotic medication, for some patients, some of the time, that somehow feels much more humane.