A few years ago the BBC wanted to film me because I was doing a clinical trial on Ginkgo biloba extract as a treatment for dementia. They turned up with a camera crew and demanded that I wear a white coat. I explained that as a psychiatrist this may not send the right message but they insisted as it would add credibility to the science I was discussing. Then, for additional visual effect, they asked I sit in front of a microscope. The last time I had done that was in the VI form! Still they insisted, so I asked my colleague and friend, a brain scientist, to borrow his microscope. It was HUGE! A massive piece of kit the size of a motorbike. Finally they asked that I look down the microscope at a slide of a person with dementia. My kind friend lent me a slide- one made by Alois Alzheimer himself with a slice of brain from his first patient, August Deter.
Why tell you that tale? When Alzheimer wrote about Auguste Deter most of the symptoms he described were psychological and behavioural, not cognitive. Yet, if you stop someone in the street and ask them “what is dementia” they will respond “memory loss”. This obscures the fact that behavioural and psychological symptoms of dementia (BPSD) cause most of the distress and crises in people with dementia.
Behavioural and psychological symptoms of dementia are almost universal, often multiple, and with protean manifestations. Common symptoms include apathy, depression, agitation and psychosis. BPSD lead to greater carer distress, move to institutional care, early death and possibly carer abuse. Very importantly, BPSD create huge distress in people with dementia who often do not have the verbal dexterity to communicate their symptoms. BPSD may also be missed by health professionals because the usual presentation of these common symptoms may be obscured.
When analysing the common symptoms as a percentage of people with early stage and late stage dementia, BPSD are common in early-stage dementia. In fact many people with dementia are referred with depression, psychosis or change in behaviour which turn out to be presenting symptoms of the condition. BPSD is also multiple – many individuals have several different symptoms that wax and wane independently.
Clinicians can face pressure to prescribe medication to treat BPSD, but medication should be considered as the last resort. Most psychotropic medication should be used with caution, if at all, in dementia. Antipsychotics (normally used to treat schizophrenia) were very commonly prescribed for this condition but are associated with early death (a significant risk if prescribed for more than a few weeks). Many antipsychotics also have inherent anticholinergic activity, so co-prescribing with anti-dementia drugs such as donepezil will reduce the effect of the latter drug. Benzodiazepines (sedatives such as diazepam) may increase the risk of falls and worsen confusion. Antidepressants may have a place in treating affective symptoms but two large trials suggest they are not effective.
Before a doctor reaches for the prescription pad, it is good to check out the following when a person with dementia presents with BPSD at any stage:
Look at the individual’s past character traits. The current “behavioural problem” may just be a manifestation of a pre-existing characteristic. Some people love to walk- but this is pathologised as “wandering” after a diagnosis of dementia. Some people are naturally pugnacious, so raising fists when frustrated may be normal for them.
Assess physical health. Issues such as constipation, dehydration, pain (eg from toothache or arthritis) can lead to BPSD. In fact a study showed that adding simple analgesia can significantly reduce BPSD symptoms.
Assess the environment and level of stimulation. I am pretty sure that if you were sitting in a chair amongst strangers (because you can’t remember who people are) for hours at a time with a TV on that you are not watching you may get frustrated. Especially if the sun is shining and you are not able to get outside. Too little, or too much noise and stimulation can lead to BPSD. Having exposure to daylight, and the right level of social stimulation and physical activity may help.
Can you wait and see? BPSD may be transient and require nothing other than patience.
If all else fails, consider referral to a specialist for an opinion or cautiously try appropriate medication, but only after considering and discussing the unique risk-benefit equation with the patient (if possible) and family.
Dr James Warner
Medical Director, Red & Yellow Care
Chair, Faculty of Old Age Psychiatry, RCPsych
National Professional Advisor, CQC