Skip to main content Accessibility help
×
Home

Feeling useful and engaged in daily life: exploring the experiences of people with young-onset dementia

  • Deliane van Vliet (a1) (a2), Anke Persoon (a1) (a2), Christian Bakker (a1) (a2) (a3), Raymond T.C.M. Koopmans (a1) (a2) (a4), Marjolein E. de Vugt (a5), Annemiek Bielderman (a1) (a2) and Debby L. Gerritsen (a1) (a2) (a4)...

Abstract

Background:

To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness.

Methods:

Eighteen people with YOD and 21 informal caregivers participated in this qualitative study. Participants were recruited from specialized day-care centers for people with YOD in the Netherlands. Four focus groups were conducted with people with YOD, and four with informal caregivers. Focus groups were audio-recorded, transcribed, and analyzed using inductive content analysis.

Results:

Four themes emerged from the analysis: (1) staying engaged, (2) loss in daily life, (3) coping and adaptation, and (4) external support. Staying engaged in activities that provide a sense of usefulness or participating in leisure and recreational activities as much as possible in daily life emerged as the key theme. Retaining a sense of usefulness was considered both important and possible by having social roles or participating in functional activities. The importance of activities providing a sense of usefulness seemed to decrease over time, while the need for pleasant activities seemed to increase. Experienced loss, coping, adaptation, and available external support are important parts of the context in which the person with YOD tries to engage in daily life as much as possible. Active coping styles and external support appear to play a facilitating role in staying engaged.

Conclusions:

It is important for people with YOD to have the opportunity to feel useful; especially in the early stages of the condition. Caregivers should be educated in ways to enhance a sense of usefulness and engagement in daily life for people with YOD.

Copyright

Corresponding author

Correspondence should be addressed to: Debby Gerritsen, Department of Primary and Community Care, Radboud University Medical Centre Nijmegen, P.O. Box 9101, 117 ELG, 6500 HB, Nijmegen, the Netherlands. Phone: +31 24 361 9588. Email: Debby.Gerritsen@radboudumc.nl.

References

Hide All
Bakker, C. et al. (2014a). Unmet needs and health-related quality of life in young-onset dementia. American Journal of Geriatric Psychiatry, 22, 11211130.
Bakker, C. et al. (2014b). The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study. International Psychogeriatrics, 26, 19912000.
Beattie, A., Daker-White, G., Gilliard, J. and Means, R. (2004). ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health & Social Care in the Community, 12, 359368.
Byrne-Davis, L. M., Bennett, P. D. and Wilcock, G. K. (2006). How are quality of life ratings made? Toward a model of quality of life in people with dementia. Quality of Life Research, 15, 855865.
Clemerson, G., Walsh, S. and Isaac, C. (2013). Towards living well with young onset dementia: an exploration of coping from the perspective of those diagnosed. Dementia (London), 13, 451466.
de Vugt, M. E. et al. (2003). Behavioural disturbances in dementia patients and quality of the marital relationship. International Journal of Geriatric Psychiatry, 18, 149154.
de Vugt, M. E. et al. (2004). Do caregiver management strategies influence patient behaviour in dementia?. International Journal of Geriatric Psychiatry, 19, 8592.
Dröes, R. M. (2007). Insight in coping with dementia: listening to the voice of those who suffer from it. Aging & Mental Health, 11, 115118.
Dutch Quality Institute for Health Care (2004). Guidelines for conducting focus groups. Utrecht: CBO.
Elo, S. and Kyngas, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62, 107115.
Endacott, R. (2008). Clinical research 4: qualitative data collection and analysis. International Emergency Nursing, 16, 4852.
Friese, S. (2012). Qualitative Data Analysis using Atlas.ti. London: SAGE publications.
Gerritsen, D. L. et al. (2007). Quality of life in dementia: do professional caregivers focus on the significant domains?. American Journal of Alzheimer's Disease & Other Dementias, 22, 176183.
Gerritsen, D. L., Steverink, N., Frijters, D. H., Ooms, M. E. and Ribbe, M. W. (2010). Social well-being and its measurement in the nursing home, the SWON-scale. Journal of Clinical Nursing, 19, 12431251.
Gerritsen, D. L., Steverink, N., Ooms, M. E. and Ribbe, M. W. (2004). Finding a useful conceptual basis for enhancing the quality of life of nursing home residents. Quality of Life Research, 13, 611624.
Graneheim, U. H. and Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105112.
Guse, L. W. and Masesar, M. A. (1999). Quality of life and successful aging in long-term care: perceptions of residents. Issues Mental Health Nursing, 20, 527539.
Harris, P. B. and Keady, J. (2009). Selfhood in younger onset dementia: transitions and testimonies. Aging & Mental Health, 13, 437444.
Hewitt, P., Watts, C., Hussey, J., Power, K. and Williams, T. (2013). Does a structured gardening programme improve well-being in young-onset dementia? A preliminary study. The British Journal of Occupational Therapy, 76, 355361.
Kinney, J. M., Kinney, J. M., Kart, C. S. and Reddecliff, L. (2011). ‘That's me, the Goother’: evaluation of a program for individuals with early-onset dementia. Dementia (14713012), 10, 361377.
Kitwood, T. (1997). Dementia Reconsidered, the Person Comes First. Maidenhead: Open University Press.
Lazarus, R. S. and Folkman, S. (1984). Stress, Appraisal and Coping. New York: Springer.
Millenaar, J. et al. (2016). Determinants of quality of life in young onset dementia – results from a European multicenter assessment. Aging & Mental Health, 21, 2430.
Nolan, M. R., Davies, S., Brown, J., Keady, J. and Nolan, J. (2004). Beyond person-centred care: a new vision for gerontological nursing. Journal of Clinical Nursing, 13, 4553.
Patton, M. Q. (1998). Qualitative Evaluation and Research Methods. London: Sage.
Phinney, A., Chaudhury, H. and O'Connor, D. L. (2007). Doing as much as I can do: the meaning of activity for people with dementia. Aging & Mental Health, 11, 384393.
Richardson, A. et al. (2016). Psychosocial interventions for people with young onset dementia and their carers: a systematic review. International Psychogeriatrics, 114.
Roach, P. and Drummond, N. (2014). ‘It's nice to have something to do’: early-onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing, 21, 889895.
Robertson, J., Evans, D. and Horsnell, T. (2013). Side by side: a workplace engagement program for people with younger onset dementia. Dementia (London), 12, 666674.
Steeman, E., Steeman, E., de Casterle, B. D., Godderis, J. and Grypdonck, M. (2006). Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722738.
van Vliet, D. et al. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 13931404.
van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T. and Verhey, F. R. (2010). Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry, 25, 10911100.
Vernooij-Dassen, M., Leatherman, S. and Olde Rikkert, M. G. M. (2011). Quality of care in frail older people: the fragile balance between receiving and giving. BMJ, 342, d403.
World Medical Association (2013). World medical association declaration of helsinki: ethical principles for medical research involving human subjects. JAMA, 310, 2191.

Keywords

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed