Life story work as a tool for communication and psychosocial intervention in holistic dementia care
By Elisabeth Miller
Abstract
Dementia causes devastating biological and psychosocial changes, which impact all aspects of life. The number of individuals diagnosed with dementia and in need of effective intervention is steadily increasing. Good intervention practice, where the person with dementia is an integral part of the process, is an essential tool for person-centred, high-quality dementia care. Life story work as a tool for communication and psychosocial intervention in holistic dementia not only tackles unmet needs, such as psychosocial isolation, inactivity, behavioural and psychological symptoms of dementia (BPSD), but restores a sense of control, purpose, connectedness and identity in the person with dementia. The finished product, be it a book, a booklet, a memory box, etc., reinforces the gains on an ongoing basis.
Introduction
Dementia is a growing global health concern, referred to as trauma, drama and tragedy (Jones & Miesen, 2004). By 2030 worldwide 65.7 million people might be living with dementia (Prince M et al., 2013). Dementia causes biological and psychosocial changes which make sociable conversation more difficult, giving rise to psychological isolation, say Bruce & Schweitzer (2014). The insidious loss of cognitive function hampers memory and other aspects of daily living, independence, social execution, and the sense of identity and personhood (Vernooij-Dassen, 2007). Dementia affects a person’s equilibrium, throwing everything into a state of cognitive dissonance (Dowling, 1995). While there is not yet a cure for dementia avenues to maintain quality of life are available. This paper considers one of them.
Life story work: expression and purpose
Life story work in dementia care can be a professional, formal fact-gathering intervention regarding a person’s health and social care practice, or an informal, spontaneous activity tailored to the needs and preferences of the person with dementia (Gridley et al., 2020).
Some people produce a comprehensive life-history book, others create a binder, a memory wallet, a diary, collages, display boards or memory boxes. Carefully selected photographs and objects from the past could be included, i.e., tools, souvenirs, school reports, prizes, songs, newspaper clippings, as they are physical reminders of identity when auto-biographical memory is impaired (Bruce & Schweitzer, 2014).
Good life story products capture treasured memories in attractive and recognisable ways and involve the person with dementia in the selection and arrangement of the material (Bruce & Schweitzer, 2014). Life story work need not be restricted to the past. Gridley et al., (2020) advocate for creating something like a scrapbook and include current items, i.e., medication, photos of recent outings, or comments by family. Those who struggle communicating information about themselves difficult can use the This is me leaflet which makes it easy to add details, i.e., cultural and family background, important events, people and places from their life, their preferences and routines (Alzheimer’s Society, 2022).
A story (Bruce & Schweitzer 2014, p.208)
Celia lived with dementia in a care home. The moment she had finished breakfast she insisted on going outside, regardless of the weather. Agitated and incoherent, she banged on locked doors and tried to open windows. During the “better part of the day” she stayed inside, but once day light began to fade, she became angry if anyone tried to prevent her going out. Some staff members resented Celia’s tantrums and considered the time inconvenient to help Celia into her coat. Eventually it transpired that prior to Celia’s admission into care she fastidiously walked a dog, even after the dog had died and her own memory had deteriorated.
Life story work: the benefits
As the story illustrates, knowing where people come from and what they have lived through is essential to providing high-quality care, as that influences how people view events in the present and respond to them. (Kitwood, cited by Bruce & Schweitzer, 2014, p.204; Grealy, 2008; Oyebode & Clare, 2014). Life history is crucial to understanding clinical presentation of dementia as well as needs and behaviour and is central to person-centred care and emotional care state (Bruce & Schweitzer, 2014). Reminiscence work, they say, supports positive identity, by conveying messages of value, interest and respect for the person and their experience. The physical products resulting from life story work reiterate these messages not just now but also in the future, they say. People with dementia, having less problems with recognition than with recall, might recognise their own story told to them, claims Sabat (2006), though they no longer remember all the details or struggle to tell the story themselves.
Memories of the past contribute to identity and behaviour in the present. (Oyebode & Clare, 2014).
Creating attractive and accessible records of life stories facilitate communication and encourage interaction, the authors say. However, very few people with dementia have the ability or needed support to create them. Tragically, inactivity for people in care homes is a persistent problem as staff members are under pressure to prioritise physical needs over emotional needs (Wenborn, 2005; Hobson, 2019). According to people with dementia and their caregivers, daytime activities and social company are major unmet needs (Han et al., 2016). Having nothing to do is a precursor for behavioural and psychological symptoms of dementia (BPSD) in nursing homes (Ferreira et al., 2020). ‘BPSD are a common and disturbing occurrence for people with dementia, their families and those who care for them‘ (Lowery & Warner, 2009, p.1).
While pharmaceutical products can not always be avoided, psychosocial interventions are as good or better than drug treatments, yet have no adverse side-effects (Bruce & Schweitzer, 2014). Life story work, as a personally meaningful activity, addresses psychosocial needs by allowing the person with dementia to ‘come alive’ (Hobson, 2019, p.78), be connected with others, feel useful and have self-worth. Individuals might be alone, the authors say, but as they revisit pleasant memories, they feel less lonely.
Life story work: good practice
Good practice in life story is not clearly defined, state Gridley et al., (2020). However, life story work should be started while people with dementia are still in a position to actively contribute and control the process, they recommend. As not everyone is suited to life story work (some might even find it distressing), they advise clearly defining who is to benefit, and by which method. Participants of their study recommend that life story work is imbedded in everyday work culture and that staff, carers and volunteers are upskilled and supported.
The commitment to value, respect and support the person and their culture compels to champion their strengths and avoid what could set them up for failure, taking into account how the person if feeling at that moment and balancing physical and emotional needs (Bruce and Schweitzer 2014; Hobson, 2019). Good practice ensures that a participant is not agitated, in pain, or feeling rushed (Hobson, 2019).
The task must be at the appropriate cognitive level, states Dowling (1995) so as to challenge, but not to frustrate, to feel good about self and to make it easier to enjoy other people, to restore a sense of purpose, identity and control. Relatives and caregivers might prefer to focus on managing the present, especially if they worry that painful memories cause distress to the person with dementia (Bruce & Schweitzer, 2014). Strong emotions can be alarming, they say, but, if handled appropriately, are usually not harmful. However, the culture of care can be a constrain, the authors caution, i.e., when care staff converse only in brief, superficial ways with people with dementia. Gridley et al., (2020) complain that systems tend to value short-term over longer-term gains, with staff members not taking the time to look at life history work. The perceived or real lack of time is a common sentiment.
Conclusion and Recommendations
Life history work as a psychosocial intervention compares favourably with current drug treatments, yet without side-effects. It is central to person-centred practice and invaluable for improving communication, engagement and quality of life for people with dementia. As long as the person with dementia is as involved and supported as possible, the process is as important as the resulting product. Life history work deserves an uplift in the priority listing of organisations, with appropriate rostering, renumeration and training.
References
Alzheimer’s Society UK, 2022, This is me, www.alzheimers.org.uk/thisisme.
Bruce & Schweitzer, 2014, ‘Working with life history’, in Downs M & and Bowers B (eds), Excellence in dementia care: research into practice, 2nd edition, McGraw-Hill Education.
Dowling James R, 1995, Keeping Busy, A Handbook of Activities for Persons with Dementia, The Johns Hopkins University Press.
Ferreira A, et al., 23 Mar 2020, Behavioral and Psychological Symptoms: A Contribution for their Understanding Based on the Unmet Needs Model. European Psychiatry, vol.41, no.1, Cambridge University Press, https://doi.org/10.1016/j.eurpsy.2017.01.1105.
Grealy J, et al, 2008, ‘The Care Staff’, ch.2 in Dementia Care, A Practical Photographic Guide, Wiley.
Gridley K, 2012, Evaluation of ‘Life Story’ intervention: Feasibility study, University of York, https://www.york.AC.uk/spru/projects/life-story-feasibility/.
Han A et al., Mar 2016, Perspectives of People with Dementia About Meaningful Activities: A Synthesis, American Journal of Alzheimer’s. Disease & Other Dementias, vol.31, no.2, p.115-123.
Hobson P, 4 Sep 2019, Enabling People with Dementia: Understanding and Implementing Person-Centred Care, p.77-89, Maintaining Meaningful Activities. Springer, 3rd edn.
Jones G & Miesen B M (eds), 2004, Care-giving in Dementia, Research and Applications, vol.3, Brunner-Routledge.
Kitwood, 1997 in Bruce & Schweitzer 2014, ‘Working with life history’, in Downs M & and Bowers B (eds), Excellence in dementia care: research into practice, 2nd edn, McGraw-Hill Education.
Lowery D & Warner J, 2009, Behavioural and Psychological Symptoms of Dementia (BPSD): The Personal and Practical Costs of Dementia, Journal of Integrated Care, vol.17 no.2, p.13-19.
Oyebode J & Clare L, 2014, ‘Supporting cognitive abilities’, in Downs M & and Bowers B (eds), Excellence in dementia care: research into practice, 2nd edn, McGraw-Hill Education.
Prince M, et al., Jan 2013, The global prevalence of dementia: A systematic review and metaanalysis, Alzheimer’s & Dementia, vol.9, no.1.
Sabat S, Jan/Feb 2006, Implicit memory and people with Alzheimer’s disease: Implications for caregiving, American Journal of Alzheimer’s Disease and Other Dementias, vol.21, no1.
Vernooij-Dassen M, 25 Jun 2007, Meaningful activities for people with dementia, Aging & Mental Health, vol.11, no4, The Netherlands, DOI: 10.1080/13607860701498443
Wenborn J, 2005, Activities in Care Homes for People With Dementia, Fact Sheet, North West Dementia Centre, Personal Social Services Research Unit, https://www.pssru.ac.uk/pub/MCpdfs/Activities_factsheet.pdf.
