Table 1

Learning points

Key pointsCommentsReferences
Raise the possibility of a Parkinsonian syndrome if in doubtInitial features may be subtle or equivocalEarly descriptions and recent revisions emphasise the variability of clinical features1 2
Offer a trial of levodopa to people with PSPSome people with PSP initially respondResponse 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 insightThis 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 crucialCompassionate 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 PSPThis could be distressing for some families, particularly if the results are not as expectedThe 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.