- Quality of Life & Wellness
Healing Stories: Storytelling and Health
Stories are not just for amusement, relaxation or entertainment. They can be used therapeutically to help people with physical or emotional problems express their fears, anxieties, experiences, or to assert and proclaim their identity.
This article looks briefly at the role of storytelling - factual and fictional - in the fields of:
(1) Dementia care
(2) Patient feedback on treatment
(3) Improving mental health.
Links or sources are provided to enable you to explore further the issues raised.
(1) Dementia Care
Storytelling, both of a factual life narrative and fictional type, now plays a significant role in the care and well-being of older people with dementia. Older people have a lifetime of experience to tap into, but dementia can block the images linked to the memories, as well as the words for describing the past and lessons learned from it.
Reminiscence exercises are widely used in day centres to stimulate memories of the past - typically in the forms of photographs, music, and objects. These exercises can be very helpful with adults in the early stages of dementia, but can be counter-productive if used with people gripped by the more advanced stages of the condition.
Anne Basting, Director of the University of Wisconsin, Milwaukee's Center on Age and Community, feels that prompting some people to remember factual information might frustrate them further, if they felt obliged to remember and, worse, failed to recall the right words to describe the objects, or memories associated with them. This can create "... a sense of failure and lead the person with dementia to shut down their communication."
However, other caring interventions have involved patients in more creative forms of storytelling of the more fictional kind, or involving a mix of fiction and past reality.
In Sweden, for example, a research study, involving fictional stories read to older people, aged between 73-90, suffering with Alzheimer, resulted in increased levels of communication by the patients with their carers and fellow sufferers.
Six meetings, each of 1.5 hours in duration, were held and a short story, around 15 minutes in length, was told to the group in the study. The stories were chosen to reflect aspects of life and connecting with the Psychologist Erik Erikson's eight phases of human development: trust; autonomy; initiative; activity; identity; intimacy; generativity; and integrity. The older people were then invited to respond to the stories and to share their life experiences. This happened formally in the group, and informally during scheduled refreshment breaks.The group leader kept a diary of group member responses.
Alzheimer sufferers can often sink into themselves and not relate to others around them. However, an analysis of the diary suggested that the storytelling generated conversations among the sufferers and awoke associations and recollections that led into new themes for discussion and informal conversations. Many of the fears expressed by group members, prompted by the stories, concerned being abandoned and left alone, and the storytelling was felt to have helped people talk about difficult topics, such as their death or worsening condition.
(Source: Holm, A,K. (2004) 'Dementia: involving patients in storytelling - a caring intervention (pilot study). Journal of Clinical Nursing, 14, 256-263. )
Taking this storytelling initiative a stage further, in the USA, the 'Timeslips Project' was developed to encourage the storytelling creativity of the dementia sufferer him or herself. It also gave older people the chance to 'perform', that is, to demonstrate their personalities, but in a non-threatening way.
Volunteer facilitators to show dementia sufferers a series of random photographs of people or animals and let them make up their own stories around these. This has led to some significant changes in the mental well-being of the sufferers.
Why not pause reading for the moment and see 'Timeslips' in action. Click onto the YouTube link immediately below.
Lessons From 'TimeSlips'
Anne Basting, mentioned earlier, and Director of the 'TimeSlips' project, has said that "People with dementia can express themselves quite beautifully through imagination." The techniques used, as shown in the film, remove pressure to remember 'facts', but instead opened up ways to be creative with ideas, applying remembered words to the images presented in often humorous and interesting ways, and encouraging respondents to relate and communicate with other members of the group. "They were no longer invisible, but were now storytellers", said Basting.
Trained facilitators conduct the sessions, which are weekly and one hour in length. Although the idea works particularly well in community settings, where the older people already know each other, the techniques can also be applied one-to-one within the home so is something that individual carers or relatives can try for themselves.
Basting has suggested a few tips for anyone wanting to organise a group or individual session.
(1) Pick a photograph of a person or animal(s) that seems to have a story behind it - family photos are best avoided, because of the reality behind these. (See example photograph, dog in car, immediately below).
(2) Ask open questions about the picture: "what name will you give her?" "Where do you want to say this story takes place" "What is it you think she is eating?"
(3) Accept and validate ALL the responses - this is important, even if the response is unintelligible or apparently irrelevant. The carer can, with imagination, make a seemingly irrelevant response into a relevant one.
(4) Write down all the individual's or group responses, and then retell the story. This is an important part of the process, as the retelling also validates the telling of the story. Carers should resist ironing out any kinks in the story - just retell it how it was told.
(5) Thank the individual and every member of the group for their contribution - even if they didn't make any. A silent participant is still a member of the group. Maybe they will contribute next time.
(6) Make it a fun experience; joke and laugh with the participants - and share the stories with others, particularly their family members. This can be done online and the 'TimeSlip' website (link follows the photograph below) gives examples of this.
The Carer's Story
Coping with a relative in the early stages of dementia can be particularly challenging. The dementia sufferer can react to their condition in unexpected and alarming ways that test the patience of the carer. But the carers' stories are not always heard.
However, in Scotland, Dr. Nicholas Jenkins at the University of Edinburgh, working in association with carers of dementia suffers, the Lothian Early Onset Support Service and the Strange Theatre - who specialise in making films with a social impact - have piloted the use of drama to explore experiences of early onset dementia and priorities for developing specialist support services.
Drawing on the experiences of carers, four vignettes illustrating common scenarios facing sufferers and carers have been filmed. Actors from the Strange Theatre played the roles of carer and dementia sufferer. The aim is to provide talking points for others carers, dementia sufferers, and the agencies that support them. The film is used at day centres, or viewed individually by carers, to generate discussion on the issues raised and to raise awareness of support services in the Scottish Lothian Region, and elsewhere.
Click onto the link below to view these.
(2) Patient Feedback
Telling one's own story - about what happened, and how you felt about it - can be a powerful force for changing systems.
This is the thinking behind 'Patient Voices', a British project to capture the human stories of patients and the working lives of those who care for them in an attempt to humanise health care in large institutions.
The 'Patient Voices' programme, launched in 2003, is managed by Pilgrim Projects Limited, with funding from the Department of Health and other health stakeholders. It is a collection of over 200 digital stories combining video, audio, still images and music that reveal the stories of patients and their professional clinicians and carers.
Patients are given the opportunity to talk about their experiences - how they feel about their illness, their treatment, the impact on relatives, and how their illnesses or disabilities have affected their lives. Their carers too, can talk about their roles and their feelings in the situation described. The tapes are quite short - typically around three minutes in length - and all are freely accessible through the 'Patient Voices' website (see link below).
The project helps administrators who devise and implement care strategies to understand the impact of decisions made on patients. The project can also help to highlight gaps in the system and reinforce the notion of putting patients, rather than systems, at the heart of care.
It gives patients a voice: "One of the hardest things in life is having words in your heart that you can't utter." (James Earl Jones).
An example of the way the project works is illustrated in the film clip below: 'Susan's Story', as Susan narrates her post-operative experiences at home after her knee replacement operation. She talks candidly about her slow progress and the practical difficulties she encountered. This can be very useful for others facing the same operation - learning at first hand what to expect from a fellow sufferer - and also instructive to nursing and other care staff, in terms of what advice they give to patients on their release from hospital.
(3) Improving Mental Health
Digital storytelling, which is the practice of using computer-based resources, can be an effective means toward attitude and behaviour change.
The following films bravely demonstrate how digital story narration can validate one's own life experiences and help others in a similar situation.
Teal's Story is a powerful film describing Teal's homelessness, gender transition, and how she coped with hostile or unsympathetic attitudes from both the hostel management and other residents.
Caet's Story offers an insight into how she dealt with her recurring bouts of depression and the impact this had on her work and relationships.
A Safe Place
Digital storytelling allows a visual depiction of events and gives the storyteller a safe and creative medium for telling their story without interruption and in their own way and on their own terms. It is cathartic, in that it can allow people to release deep-seated emotions and to connect with others facing similar issues.
The process of building the story provides the storyteller to reflect on what has happened, clarify the logic of their thinking, and to release or reframe negative emotions.
It can also be a powerful tool for political change as the storyteller examines and makes the connections between external causal events and situations and their individual responses to these. Others can recognise and connect their own lives to the storyteller and band together to campaign for better social understanding, justice and structural change.
About Us - Settle Stories
We, Settle Stories, are an Arts and Heritage Charity based in the the market town of Settle in the Yorkshire Dales. Established in 2010 we use stories - and encourage storytelling - to touch the lives of ordinary people and strengthen communities. We have a small number of paid staff and a group of volunteers who believe in what we are doing.
Our annual Settle Storytelling Festival brings internationally known and award winning artists to Settle for families and people from all sections of the community to enjoy. We also manage a unique archive of oral history of the Yorkshire Dales - the W R Mitchell Archive, and you can listen to life stories from the Dales online via our website.
More information - see link below.