Key points | Comments | References |
Raise the possibility of a Parkinsonian syndrome if in doubt | Initial features may be subtle or equivocal | Early descriptions and recent revisions emphasise the variability of clinical features1 2 |
Offer a trial of levodopa to people with PSP | Some people with PSP initially respond | Response rate estimates vary from 10% to 50%; the PSP-Parkinson’s form has the highest levodopa response rate2 3 |
Dad seemed less distressed about his condition than us, viewed by me as ‘blunting of his previously fine frontal cortex’ | In fact, PSP is predominantly subcortical so there may be apathy (‘acceptance’) or frontal disinhibition Responses will be slower so give PSP patients time to express themselves | Cognitive dysfunction occurs in most people with PSP Executive function is the most affected involving subcortical/frontal connections4 5 |
Medical relatives may seem angry or interfering and adopt a healthcare role, without having insight | This is often due to fear and powerlessness Guide us to stop trying to be our relative’s doctor or nurse | There is general information for relatives of people who are terminally ill and PSP associations worldwide that offer support6 7 |
Excellent palliative care is crucial | Compassionate end-of-life care has a major impact Resist cut-backs that threaten progress in palliative care | Worldwide, only 14% of people who need palliative care receive it8 |
Mum was sent a letter about dad’s histology results confirming PSP | This could be distressing for some families, particularly if the results are not as expected | The UK Brain Bank information leaflet states that relatives will be sent a letter with results Best practice should include an offer for relatives to meet with the treating clinician to discuss the results9 |
PSP, progressive supranuclear palsy.