I kept changing my topic idea as people came up with similar (but better!) ideas to those I already had. Here is the latest version!:
Dementia is a condition involving progressive cognitive impairment, before death. In the recent years there has been a big governmental push towards early diagnosis of dementia (National dementia strategy 2009). There is no ‘cure’ for dementia, but there are some medications that slow disease progression in around 50% of people.
Some patients and families however, explicitly state that they DO NOT want to know the diagnosis since depression may follow
I have met clinicians who think everybody MUST know their diagnosis, but the majority seems to think that the patient should have the right to decide whether they are informed of their diagnosis or not.
My research question would be along the lines of (although, I am realizing how important it is to decide on the exact wording of the question, and how vital it is to study the existing research base):
‘Do people want to be made aware of their diagnosis of dementia?’
I would want to interview:
old age psychiatrists,
GP’s and other health professionals working with dementia patients,
people with dementia: those diagnosed less than 3 months ago as well as patients diagnosed over 1 year ago,
family members of sufferers,
and people with no memory problems / ‘healthy people’
Potential Questions:
-What is your understanding of the condition called dementia?
Then, an explanation of dementia would need to be given. The person would have to be given the following scenario: you / a family member have been suffering from memory problems that are affecting your life and you have consulted a doctor. At the initial assessment the doctor informs you that there are many different causes of memory problems, some of which can be treated. However, if after investigation, the doctor diagnosed you with dementia:
-What would be the benefits to you of knowing the diagnosis?
-Can you suggest any negative effects of being given a diagnosis?
-After consideration, would you want to know the diagnosis? (alternative would be to just have symptomatic treatment)
-Further reasons for the above answer
-In general, once the medical team reaches a diagnosis, how should things proceed? (e.g. everybody must be told their diagnosis, patient can choose whether they are informed, patient can nominate a family member to hear the diagnosis and make a decision as to whether to tell the patient, nobody is informed of a dementia diagnosis, and symptoms are treated)
-If the individual can decide whether or not they hear their diagnosis, what type of advice / counseling should they receive to aid their decision?
