Caring for Dad, from near and afar – Simon’s story
Simon, who has lived in New Zealand for two decades, discusses how he cares for his dad who has Alzheimer’s disease and lives alone in the UK.
We all have our own life experiences which shape us as individuals – but people with dementia often have problems with communication and memory that make it difficult to express who they are and what matters to them.
Creating a life story can be a useful way to record important information about the person and help others understand and relate to them better.
A life story acts as a ‘fact file’ about the person with dementia, such as their background, interests, and who and what is important to them. It can be shared with other people, including family and friends, carers and healthcare professionals.
A life story can:
- help a person with dementia to reflect on important information about themself and strengthen their sense of identity
- bring them comfort by reminding them of special memories and other things that are important to them
- help family and friends to develop a closer bond with the person through the sharing of stories
- give health and social care professionals a clearer understanding of the person’s life, their preferences, and how to meet their needs. This is particularly helpful if the person has a new carer, is moving into a care home, or is in hospital
- encourage reminiscence, which can help them retrieve past memories
When you’re developing a life story with a person with dementia, you can choose the format – or combination of formats – that works best for them. These include:
- books: these are portable and easy for carers and visitors to refer to. Keep it simple by using two contrasting colours, photos, and a clear font – too many colours or patterns can be confusing for people with dementia
- collages: these focus on photos and other images that encourage the person to reminisce, and can be especially useful in the later stages of dementia, when they may be unable to read
- video recordings: a good way to record visual information such as home videos and messages from the person with dementia to their family, friends and carers, and vice versa
- memory boxes: these contain meaningful items and are particularly useful for people with sensory impairments (such as sight loss or perceptual problems) and those in the later stages of dementia who rely more on touch or smell to communicate
- apps: there are many programmes that can be downloaded to a phone or tablet and allow you to save and share photos; mark special places on a map; and play video and audio files
- personal profiles: these are short versions of a life story – often just one page long – and are useful in hospital settings to help staff understand the person’s needs
Many care settings have their own life story book templates so you may need to transfer some of the information into that so professionals can use it alongside your fuller record.
- Involve the person with dementia as fully as possible to ensure that the life story reflects their personality, wishes and preferences
- Offer help where needed, and write/type/record the information with the person so they can see their story forming
- Go with the flow and let the person talk freely about their life – you don’t need to start from the beginning
- Try taking one topic at a time so the person doesn’t get overwhelmed
- Take breaks and complete the story at their pace – it might take days, weeks or months. You can always add more later
- Try prompting the person with photos of familiar people and places
- Be sensitive, think carefully about what information the person would want to be shared, and be prepared for them to find the process emotional
- If the person with dementia finds it difficult to communicate, family members and friends may be able to provide key information
- Life stories are not just about the past – you can also include information about the person with dementia at the present time and their future wishes
- The life story can remain ‘live’ so you can add to or change it over time to ensure it is up to date and relevant
- Try not to bombard the person with questions. It may be easier to start open-ended conversations about a broad topic – for example, you might say, “Can you tell me about where you grew up?”
Everyone’s life story is individual, but you could include:
- personal details such as name, age, address etc
- their first language and other languages spoken
- significant relationships with family and friends
- sexuality and gender preferences
- religious, spiritual or cultural beliefs and routines
- childhood and early life history
- current employment (if applicable) and work history
- significant places and life events
- preferences with their appearance
- food/drink likes and dislikes
- preferred music and TV programmes
- activities they do and don’t enjoy
- sports teams they support
- general likes and dislikes
- their routines
- any physical or mental health conditions
- occasions that they like to celebrate, eg birthdays, anniversaries, religious festivals
- values
If the person has experienced sad or traumatic life events that would cause worry or upset, you may want to avoid revisiting these, but it may be helpful to explain these on a separate document that can be given to family, friends and carers so they can identify if changes in behaviour are linked to a specific event.
When the life story is completed, share it with family, friends and health and care professionals, so they too can get to know the person better and learn more about how to meet their needs.
This template can help you get started with creating a life story. It is designed to be flexible, so you can make it shorter or longer, and add information, photos and pictures that are relevant to the person with dementia.
To speak to a dementia specialist Admiral Nurse about compiling a life story or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can pre-book a phone or video call with an Admiral Nurse.
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
