As dementia is a condition in which medication merely delays the progression, a huge part of the illness experience is the environment (including the social support mechanisms) within which the patient lives and in many cases, deteriorates.
This is why I propose that perhaps more effective communication between the doctor, patient and the family of the patient could perhaps alleviate any unnecessary suffering.
I think what prompted me to choose this topic is how in the lecture it was said that very often the patient is not asked what they are most concerned about. This condition sprung to my mind as one where the patient’s ideas, concerns and expectations should guide the nature and priorities of the management and how the patient is cared for. For example, for some it may be losing their sense of identity, it may be causing distress towards their family/not being able to support them/changing dynamics in their relationships, memory loss or medical problems like incontinence.
Of course because of the nature of the study it would be most appropriate to include newly-diagnosed dementia patients in the preliminary stages of the condition. The patient would ideally be interviewed alone after a GP consultation with their long-term doctor.
The results would ideally facilitate a further conversation (and action) with all relevant parties to guide the patient’s care.
RESEARCH QUESTION
‘How patients with dementia view their condition and how they feel about the future’
TOPICS
-Understanding of the condition
-Understanding of nature of the disease (progressive, debilitating)
-Their biggest fears, their biggest concerns
-Where they would like to be cared for
-Who they would like to be cared by
-Nature of relationship with family and how they anticipate this would be affected
QUESTIONS
What do you know about dementia?
Are you aware of how dementia will affect you?
How do you feel about these effects?
Which effects do you fear the most?
What is the most important service to you that the healthcare system can provide?
Where would you like to be cared for as the condition progresses?
Who would you like to be cared by?
What are your thoughts regarding how this would affect your family?
