There is a natural impulse after someone is diagnosed with dementia to capture as many of their life stories as possible. It's a great idea to record a loved one's life story (or your own, if you are the person living with dementia) before cognitive impairment worsens and memories fade away. When dealing with dementia, life story work requires more patience and certain skills. That's okay! The effort put in now will produce something you'll and future generations will treasure forever.
It cannot be emphasized or over-stated enough just how much the following advice should be tailored to the individual's specific needs and abilities. Dementia manifests itself differently in each person who has it. There are various types of dementia and different stages someone could be in. Therefore, a person-centered approach is key here.
The Benefits of Life Story Work for People Living with Dementia
- Enhances sense of identity
- Encourages communication
- Brings about a greater understanding of a person's needs and wishes (which can inform the quality of their care)
- Creates a sense of closeness with the carer or family member asking questions
- Can be used to support reminiscence therapy as their condition progresses
Things to Consider When Interviewing Someone with Dementia
- Time: The person may find answering a barrage of questions to be mentally exhausting. It's best to keep the question-asking short and sweet (no more than 30-45 minutes). If possible, plan out your questions and ask them over several days or weeks. This sometimes yields better results as it supports a natural, casual conversation and doesn't give the person with dementia anxiety about having to remember or answer everything correctly.
- Cues: Be mindful of the person's body language. If they seem fidgety or uncomfortable, stop and try later. When there's a question that stumps them, make sure they know it isn't a big deal. Simply try another one. If they begin to repeat themselves more, it's time to wrap up. If there is a memory that brings up a lot of emotion, be present and understanding. Let them feel what they need to feel and offer a comforting hand or a tissue.
- Environment: Pick a quiet environment away from distractions. People with dementia can be especially sensitive to noise and light.
- Format: You may desire to record a video of your loved one speaking, but they find the camera distracting or get nervous around it. You could try moving the camera so it isn't in their line of vision. If that doesn't work, use an audio recording device instead.
- Yourself: If you're the spouse or child of the person with dementia, consider whether this might be too emotionally difficult for you to do. Coming face to face with your loved one's memory loss involves grief and you may become upset during the interview. Therefore, consider asking a professional, distant relative or acquaintance you trust to facilitate the interview. Otherwise, remain as warm, calm and positive as possible.
Tips for Recording a Life Story After a Dementia Diagnosis
- Use photos, videos, music, etc for icebreakers or to help stimulate conversation and memories
- Know what you want to ask ahead of time, but be prepared to not get answers to everything
- Pick a quiet room with natural light to interview in (minimize distractions like phones, TVs, kids running around, etc.)
- Keep any one-off interview under 45 minutes
- Pay attention to body language (look for signs they're tired or uncomfortable)
- Take breaks when necessary
- Don't wait too long for them to recall a memory, just move onto another question
- Try to keep questions direct and use shorter sentences
- Remain calm, warm and positive throughout the process