Dementia and Life Story can be a union that produces a wonderful family legacy. Whilst there is a lesson to be learned from obtaining the life stories of our loved ones before the onset of age and symptoms that may be associated with a decline in memory, understanding the phenomenon can help elicit communication that will be a wonderful life story.
A Salad of Information
Communication is more than the spoken word. Successful understanding and communication happens when we not only listen, but stay in the moment with the loved one and be ready to be where they are in their story telling. This salad of information can be documented as it emerged or reorganised to create a flowing narrative. Some may consider that this salad of ideas and concepts a wonderful representation of their loved one and seize as many opportunities as possible to capture experiences still stored in their mind. There is no right or wrong in either of these outcomes.
There are multiple stages to dementia and if you listen, you will still get the message. Let the interviewee use their own words and honour their reality and the path of this reality.
The truth of their story probably lies between their conscious and subconscious reality. Memories remain intact and emotional content will still be there even though the conversation may jump and skip around in a non-chronological sequence. Memories may be circular but in fact, it is significant moments that will become the stem of their story telling. As cognition goes down in the phenomenon of dementia, intuition will become enhanced and perhaps more focused even for short bursts.
Patience is central when constructing a life story of someone with dementia but so is the gift of empowerment to the interviewee, and allowing them to tell their story. Never ask a question that requires a certain answer, e.g. what is the date? It is upsetting for anyone to be asked a question they don’t know the answer to.
Here are a few hints you may find helpful.
- Stay with more open questions in their here and now and ask ‘how are you feeling’ or ‘how did that make you feel’, ‘can you tell me about …’, ‘what was it like when you learnt the …’.
- Use memory joggers such as photos or artefacts to bring memories to the front. Ask questions such as ‘can you tell me about this…’. Use older photos and not recent photos as the interviewee’s mind may be at back at that time, e.g. sibling, parent, spouse at the time of their wedding. Try and match the photo to an experience such as holidays or significant event.
- Bring another person into the interview who can share in meaningful conversation and so become a memory jogger.
- Keep memories positive. There is no value in bringing up distressful memories and including them in a life story. If the interviewee does become distressed, comfort them and distract them and move the subject matter on.
- Get in the habit of taping any sessions you have with the interviewee with their permission. New and relevant memories can disclose themselves at any time.
People with Dementia are still living their lives
People with dementia are still living their lives and still hoping and dreaming as we all do. Just because they can no longer organise their activities does not mean they don’t feel anticipation and excitement. They may be sensitive however to any intrusion into what they see as the personal aspect of their lives when society demanded such things were private. They may also retain a life-long attitude of being self-reliant, staunch and uncomplaining. The world was a very different place when they were young and so it is mindful to be respectful of these attitudes. When trust is in place, the interviewee may slowly part with absolute morsels of information that will be treasured and appreciated.
When organising to write the life story of a person with dementia or other memory issues, don’t get put off with a feeling of hopelessness. Bring together what you can, take your time and support your effort with stories and memories of others present at the time, context such as world events and geography, a search on ancestry websites for relevant information and any other research available.
Dementia and Life Story
Utilise the efforts and skills of the younger generation and bring them into the creation of the story of their elders and family. The efforts will bring hope and pleasure to all family members and future family.
Alzheimer’s Australia. Fight Alzheimer’s Safe Australia