People with Alzheimer's disease/dementia and their families are only now starting to open up their homes to the media to share their very personal experiences of living with a condition that can make every day activities a challenge and simple conversations difficult.
People with dementia and their families are often motivated to tell their story because they might be able to help others who find themselves in a similar situation. Talking in a safe and affable environment, to people who are prepared to listen and understand, can give families a sense of release and freedom. But only if they are treated with dignity and understanding.
When interviewing a person with Alzheimer's disease or a related dementia, one should keep the following advice in mind:
- Remember the individual behind the condition. Report them as a person first and someone who has dementia second. Listen to their story and avoid correcting, interrupting or speaking on behalf of the person.
- Where possible, the consent to participate in the interview should be sought from both the person with dementia and their family carer.
- Treat the person with dementia like any other interviewee. Act naturally, greet them with a handshake, and avoid patronising or over-praising.
- Interviewing a person with dementia may require patience. If necessary, allow more time for answers and repeat questions if required.
- Be clear and precise when seeking information on the person's experiences and ask only one concisely phrased question at a time.
- Dementia affects the person's memory, so be aware that it may be difficult for the person to answer questions that require them to draw on their memory.
- Often the person with dementia will reply to questions with short, concise answers rather than longer comprehensive ones, so be prepared to move on to the next point or topic.
- If you do not understand the answer you receive, ask for clarification, or repeat what you have understood for confirmation.
- Speaking clearly may help when interviewing someone with dementia but remember it is not necessary to raise your voice when speaking.