Does the Well-Being of Individuals with Down Syndrome and Dementia Improve When Using Life Story Books and Rummage Boxes? A Randomized Single Case Series Experiment
Nicola Crook
Department of Psychological Sciences, Norwich Medical School, University of East Anglia, Norwich, UK
Norfolk and Suffolk NHS Foundation Trust, Norwich, UK
Search for more papers by this authorMalcolm Adams
Department of Psychological Sciences, Norwich Medical School, University of East Anglia, Norwich, UK
Search for more papers by this authorNicola Shorten
Norfolk Community Health and Care NHS Trust, Norwich, UK
Search for more papers by this authorCorresponding Author
Peter E. Langdon
Tizard Centre, University of Kent, Canterbury, UK
Broadland Clinic, Hertfordshire Partnership University NHS Foundation Trust – Norfolk, UK
Correspondence
Any correspondence should be directed to Peter E. Langdon, Tizard Centre, University of Kent, Canterbury CT2 7LR, UK (e-mail: [email protected]).
Search for more papers by this authorNicola Crook
Department of Psychological Sciences, Norwich Medical School, University of East Anglia, Norwich, UK
Norfolk and Suffolk NHS Foundation Trust, Norwich, UK
Search for more papers by this authorMalcolm Adams
Department of Psychological Sciences, Norwich Medical School, University of East Anglia, Norwich, UK
Search for more papers by this authorNicola Shorten
Norfolk Community Health and Care NHS Trust, Norwich, UK
Search for more papers by this authorCorresponding Author
Peter E. Langdon
Tizard Centre, University of Kent, Canterbury, UK
Broadland Clinic, Hertfordshire Partnership University NHS Foundation Trust – Norfolk, UK
Correspondence
Any correspondence should be directed to Peter E. Langdon, Tizard Centre, University of Kent, Canterbury CT2 7LR, UK (e-mail: [email protected]).
Search for more papers by this authorAbstract
Background
This study investigated whether a personalized life story book and rummage box enhanced well-being and led to changes in behaviour for people with Down syndrome (DS) who have dementia.
Materials and Methods
A randomized single case series design was used with five participants who had DS and a diagnosis of dementia. Participants were invited to take part in three conditions at random (i) life story book, (ii) rummage box and (iii) no-intervention condition.
Results
The two reminiscence conditions were significantly associated with enhanced well-being as compared to the no-intervention condition. However, for one participant, the life story book was associated with significantly higher well-being, while for another participant, the rummage box was associated with significantly higher well-being, suggesting some participants may prefer one method over another.
Conclusions
Personalized life story books and rummage boxes are associated with higher levels of well-being for people with DS and dementia.
References
- Bigby C. (2010) A five-country comparative review of accommodation support policies for older people with intellectual disability. Journal of Policy and Practice in Intellectual Disabilities 7, 3–15.
- Bittles A. H., Bower C., Hussain R. & Glasson E. J. (2007) The four ages of Down syndrome. European Journal of Public Health 17, 221–225.
- Bradford Dementia Group (2005) Evaluating Dementia Care: The Dementia Care Mapping Method. 8th edn. University of Bradford, Bradford.
- Brooker D. (2005) Dementia care mapping: a review of the research literature. The Gerontologist 45(suppl 1), 11–18.
- Brooker D. & Duce L. (2000) Wellbeing and activity in dementia: a comparison of group reminiscence therapy, structured goal-directed group activity and unstructured time. Aging & Mental Health 4, 354–358.
- Chenoweth L. & Jeon Y.-H. (2007) Determining the efficacy of dementia care mapping as an outcome measure and a process for change: a pilot study. Aging and Mental Health 11, 237–245.
- Cooke H. A. & Chaudhury H. (2013) An examination of the psychometric properties and efficacy of Dementia Care Mapping. Dementia 12, 790–805.
- Finnamore T. & Lord S. (2007) The use of dementia care mapping in people with learning disability and dementia. Journal of Intellectual Disability Research 11, 157–165.
- Fossey J., Lee L. & Ballard C. (2002) Dementia care mapping as a research tool for measuring quality of life in care settings: psychometric properties. International Journal of Geriatric Psychiatry 17, 1064–1070.
- Fraser M. B. & Mitchell A. (1876) Kalmuc idiocy: report of a case with autopsy with notes on sixty-two cases. The Journal of Mental Science 22, 169–179.
- Glasson E. J., Sullivan S. G., Hussain R., Petterson B. A., Montgomery P. D. & Bittles A. H. (2003) Comparative survival advantage of males with Down syndrome. American Journal of Human Biology 15, 192–195.
- Hewitt H. (1998) Life story books for people with learning disabilities. Nursing Times 94, 61–63.
- Hewitt H. (2000) Life story books for people with profound intellectual disabilities (ID): issues of care and identity. Journal of Intellectual Disability Research 48, 477.
- Holland A. J., Hon J., Huppert F. A., Stevens F. & Watson P. (1998) Population-based study of the prevalence and presentation of dementia in adults with Down's syndrome. British Journal of Psychiatry 172, 493–498.
- Holland A. J., Hon J., Huppert F. A. & Stevens F. (2000) Incidence and course of dementia in people with Down's syndrome: findings from a population-based study. Journal of Intellectual Disability Research 44, 138–146.
- Iacono T., Bigby C., Carling-Jenkins R. & Torr J. (2014) Taking each day as it comes: staff experiences of supporting people with Down syndrome and Alzheimer's disease in group homes. Journal of Intellectual Disability Research. 58, 521–533.
- Jaycock S. & Persaud M. (2004) The effectiveness of care mapping in intellectual disability (ID) services. Journal of Intellectual Disability Research 48, 462.
- Jaycock S., Persaud M. & Johnson R. (2006) The effectiveness of dementia care mapping in intellectual disability residential services: a follow-up study. Journal of Intellectual Disabilities 2006, 365–375.
10.1177/1744629506072870 Google Scholar
- Kuhn D., Ortigara A. & Kasayka R. (2000) Dementia care mapping: an innovative tool to measure person-centred care. Alzheimer's Care Today 1, 7–15.
- Leverenz J. B. & Raskind M. A. (1998) Early amyloid deposition in the medial temporal lobe of young Down syndrome patients: a regional quantitative analysis. Experimental Neurology 150, 296–304.
- Middleton D. & Hewitt H. (1999) Remembering as social practice: identity and life story work in transitions of care for people with learning disabilities. Narrative Inquiry 9, 97–121.
- National Institute for Health and Care Excellence (2012). Dementia. Supporting People With Dementia and Their Carers in Health and Social Care. NICE Clinical Guideline 42. National Institute for Health and Care Excellence, London.
- Ness S., Rafii M., Aisen P. S., Krams M., Silverman W. & Husseini M. (2012) Down's syndrome and Alzheimer's disease: towards secondary prevention. Nature Reviews Drug Discovery 11, 655–656.
- Neumann M. A. (1967) Langdon Down syndrome and Alzheimer's disease. Journal of Neuropathology and Experimental Neurology 26, 149–150.
- Ohara P. T. (1972) Electron microscopical study of the brain in Down's syndrome. Brain 95, 681–684.
- Olson M. I. & Shaw C. M. (1969) Presenile dementia and Alzheimer's disease in mongolism. Brain 92, 147–156.
- Penrose L. S. (1949) The incidence of Mongolism in the general population. The Journal of Mental Science 95, 685–688.
- Persaud M. & Jaycock S. (2001) Evaluating care delivery: the application of dementia care mapping in learning disability residential services. Journal of Learning Disabilities 5, 345–352.
10.1177/146900470100500406 Google Scholar
- Porter E. (1998) Gathering our stories; claiming our lives: seniors’ life story books facilitate life review, integration and celebration. Journal on Developmental Disabilities 6, 44–59.
- Read S. (1996) Helping people with learning disabilities to grieve. British Journal of Nursing 5, 91–95.
- Scholey K. A. & Woods B. (2003) A series of brief cognitive therapy interventions with people experiencing both dementia and depression: a description of techniques and common themes. Clinical Psychology & Psychotherapy 10, 175–185.
- Struwe F. (1929) Histopathologische Untersuchungen iiber Entstehung und Wesen der senilen Plaques. Zeitshrift fur die Gesamte Neurologie und Psychiatrie 122, 291–307.
10.1007/BF02876635 Google Scholar
- Teri L. & Gallagher-Thompson D. (1991) Cognitive behavioural interventions for treatment of depression in Alzheimer's patients. The Gerontologist 31, 413–416.
- Teri L., Logsdon R. G., Uomoto J. & McCurry S. M. (1997) Behavioural treatment of depression in dementia patients: a controlled clinical trial. Journal of Gerontology 52, 159–166.
- Thornton A., Hatton C. & Tatham A. (2004) Dementia Care Mapping reconsidered: exploring the reliability and validity of the observational tool. International Journal of Geriatric Psychiatry 19, 718–726.
- Van Puyenbroeck J. & Maes B. (2008) A review of critical, person-centred and clinical approaches to reminiscence work for people with intellectual disabilities. International Journal of Disability, Development and Education 55, 43–60.
- Van Puyenbroeck J. & Maes B. (2009) The effect of reminiscence group work on life satisfaction, self-esteem and mood of ageing people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 22, 23–33.
- Wisner E. & Green M. (1986) Treatment of demented patient's anger with cognitive-behavioural strategies. Psychological Reports 59, 447–450.
- Wisniewski K. E., Wisniewski H. M. & Wen G. Y. (1985) Occurence of neuropathological changes and dementia of Alzheimer's disease in Down's syndrome. Annals of Neurology 17, 278–282.
- Woods B., Aguirre E., Spector A. E. & Orrell M. (2012) Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews 2, DOI: 10.1002/14651858.CD005562.pub2.
- Zigman W. B. & Lott I. T. (2007) Alzheimer's disease in Down syndrome: neurobiology and risk. Mental Retardation and Developmental Disabilities Research Reviews 13, 237–246.
- Zigman W., Silverman W. & Wisniewski H. M. (1996) Alzheimer's disease in Down syndrome: clinical and pathological changes. Mental Retardation and Developmental Disabilities Research Reviews 2, 73–79.
10.1002/(SICI)1098-2779(1996)2:2<73::AID-MRDD3>3.0.CO;2-Y Google Scholar
