Skip to main content
Top
Published in: BMC Geriatrics 1/2015

Open Access 01-12-2015 | Research article

Influencers on quality of life as reported by people living with dementia in long-term care: a descriptive exploratory approach

Authors: Wendy Moyle, Deirdre Fetherstonhaugh, Melissa Greben, Elizabeth Beattie, AusQoL group

Published in: BMC Geriatrics | Issue 1/2015

Login to get access

Abstract

Background

Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life.

Methods

A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven.

Results

Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence, (b) having something to do, and (c) the importance of social interaction.

Conclusions

The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.
Literature
1.
go back to reference World Health Organisation. Dementia: a public health priority. Switzerland: World Health Organisation; 2012. World Health Organisation. Dementia: a public health priority. Switzerland: World Health Organisation; 2012.
2.
go back to reference Australian Institute of Health and Welfare. Dementia in Australia. Cat no. AGE 70, Canberra; 2012. Australian Institute of Health and Welfare. Dementia in Australia. Cat no. AGE 70, Canberra; 2012.
3.
go back to reference Australian Institute of Health and Welfare. Dementia among aged care residents: first information from the aged care funding instrument. Cat. No. AGE 63, Canberra; 2011. Australian Institute of Health and Welfare. Dementia among aged care residents: first information from the aged care funding instrument. Cat. No. AGE 63, Canberra; 2011.
4.
go back to reference Australian Government. Aged care act 1997. Canberra; 2014 Australian Government. Aged care act 1997. Canberra; 2014
5.
go back to reference Brownie S, Nancarrow S. Effects of person-centred care on resident and staff in aged-care facilities: a systematic review. Clin Ints in Aging. 2012;8:1–10. Brownie S, Nancarrow S. Effects of person-centred care on resident and staff in aged-care facilities: a systematic review. Clin Ints in Aging. 2012;8:1–10.
6.
go back to reference Moyle W, Murfield J, Griffiths S, Venturato L. Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. J Adv Nrs. 2012;68:2237–46.CrossRef Moyle W, Murfield J, Griffiths S, Venturato L. Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. J Adv Nrs. 2012;68:2237–46.CrossRef
7.
go back to reference Sloane P, Zimmerman S, Williams C, Reed P, Gill K, Preisser J. Evaluating the quality of life of long-term care participants with dementia. The Geront. 2005;45:37–49.CrossRef Sloane P, Zimmerman S, Williams C, Reed P, Gill K, Preisser J. Evaluating the quality of life of long-term care participants with dementia. The Geront. 2005;45:37–49.CrossRef
8.
go back to reference Moyle W, Gracia N, Murfield J, Griffiths S, Venturato L. Assessing quality of life of older people with dementia in long-term care: a comparison of two self-report and proxy accounts. J Clin Nrs. 2012;21:1632–40.CrossRef Moyle W, Gracia N, Murfield J, Griffiths S, Venturato L. Assessing quality of life of older people with dementia in long-term care: a comparison of two self-report and proxy accounts. J Clin Nrs. 2012;21:1632–40.CrossRef
9.
go back to reference Moyle W, Murfield J. Health related quality of life in older people with severe dementia: challenges for measurement and management. Expert Rev Pharmacoecon Outcomes Res. 2013;13:109–22.CrossRefPubMed Moyle W, Murfield J. Health related quality of life in older people with severe dementia: challenges for measurement and management. Expert Rev Pharmacoecon Outcomes Res. 2013;13:109–22.CrossRefPubMed
10.
go back to reference Rabins P, Black B. Measuring quality of life in dementia: purposes, goals, challenges and progress. Int Psychogeriatr. 2007;19:401–7.CrossRefPubMed Rabins P, Black B. Measuring quality of life in dementia: purposes, goals, challenges and progress. Int Psychogeriatr. 2007;19:401–7.CrossRefPubMed
11.
go back to reference Arlt S, Hornung J, Eichenlaub M, Jahn H, Bullinger M, Petersen C. The patient with dementia, the caregiver and the doctor; cognition, depression and quality of life from three perspectives. Int J of Geriatr Psych. 2008;23:604–10.CrossRef Arlt S, Hornung J, Eichenlaub M, Jahn H, Bullinger M, Petersen C. The patient with dementia, the caregiver and the doctor; cognition, depression and quality of life from three perspectives. Int J of Geriatr Psych. 2008;23:604–10.CrossRef
12.
go back to reference Trigg R, Jones RW, Skevington SM. Can people with mild to moderate dementia provide reliable answers about their quality of life? Age Ageing. 2007;36:663–9.CrossRefPubMed Trigg R, Jones RW, Skevington SM. Can people with mild to moderate dementia provide reliable answers about their quality of life? Age Ageing. 2007;36:663–9.CrossRefPubMed
13.
go back to reference Hunt CS, Bhattacharyya S, Burns A, Camus V, Liperoti R, Marriott A, et al. Patient and caregiver perspectives of quality of life in dementia. Dem Geriat Cog Dis. 2008;26:138–46.CrossRef Hunt CS, Bhattacharyya S, Burns A, Camus V, Liperoti R, Marriott A, et al. Patient and caregiver perspectives of quality of life in dementia. Dem Geriat Cog Dis. 2008;26:138–46.CrossRef
14.
go back to reference Thorgrimsen L, Selwood A, Spector A, Royam L, de Madariaga LM, Woods B, et al. Whose quality of life is it anyway? The validity and reliability of the quality of life Alzheimer’s Disease (QoL_AD) Scale. Am J Alzh Dis Other Dement. 2003;17:201–8. Thorgrimsen L, Selwood A, Spector A, Royam L, de Madariaga LM, Woods B, et al. Whose quality of life is it anyway? The validity and reliability of the quality of life Alzheimer’s Disease (QoL_AD) Scale. Am J Alzh Dis Other Dement. 2003;17:201–8.
15.
go back to reference Banerjee S, Samsi K, Petrie CD, Alvir J, Treglia M, Schwam EM, et al. What do we know about quality of life in dementia? A review of the emerging evidence on predictive and explanatory value of disease specific measures on health related quality of life in people with dementia. Int J Geriatr Psych. 2009;24:15–24.CrossRef Banerjee S, Samsi K, Petrie CD, Alvir J, Treglia M, Schwam EM, et al. What do we know about quality of life in dementia? A review of the emerging evidence on predictive and explanatory value of disease specific measures on health related quality of life in people with dementia. Int J Geriatr Psych. 2009;24:15–24.CrossRef
16.
go back to reference Hounsome N, Orrell M, Edwards RT. EQ-5D as a quality of life measure in people with dementia and their carers: evidence and key issues. Value Health. 2011;14:390–9.CrossRefPubMed Hounsome N, Orrell M, Edwards RT. EQ-5D as a quality of life measure in people with dementia and their carers: evidence and key issues. Value Health. 2011;14:390–9.CrossRefPubMed
17.
go back to reference von Essen L. Proxy ratings of patient quality of life—factors related to patient-proxy agreement. Acta Oncologica. 2004;43:229–34.CrossRef von Essen L. Proxy ratings of patient quality of life—factors related to patient-proxy agreement. Acta Oncologica. 2004;43:229–34.CrossRef
18.
go back to reference Moyle W, Venturato L, Griffiths S, Grimbeek P, McAllister M, Oxlade D, et al. Factors influencing quality of life for people with dementia: a qualitative approach. Age Ment Hlth. 2011;15:970–7.CrossRef Moyle W, Venturato L, Griffiths S, Grimbeek P, McAllister M, Oxlade D, et al. Factors influencing quality of life for people with dementia: a qualitative approach. Age Ment Hlth. 2011;15:970–7.CrossRef
19.
go back to reference Beattie E, O’Reilly M, Moyle W, Chenoweth L, Fetherstonhaugh D, Horner B, et al. Quality of life and care for people with dementia in residential care facilities: Dementia QoL-Care: A national study protocol. Int Psychogeriatr. 2015, doi:10.1017/S1041610215000435 Beattie E, O’Reilly M, Moyle W, Chenoweth L, Fetherstonhaugh D, Horner B, et al. Quality of life and care for people with dementia in residential care facilities: Dementia QoL-Care: A national study protocol. Int Psychogeriatr. 2015, doi:10.1017/S1041610215000435
20.
go back to reference Baxter P, Jack S. Qualitative case study methodology: study design and implementation for novice researchers. Qual Report. 2008;13:544–59. Baxter P, Jack S. Qualitative case study methodology: study design and implementation for novice researchers. Qual Report. 2008;13:544–59.
21.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psych. 2006;3:77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psych. 2006;3:77–101.CrossRef
23.
go back to reference Brooker D. What is person-centred care in dementia? Rev Clin Geront. 2004;13:215–22.CrossRef Brooker D. What is person-centred care in dementia? Rev Clin Geront. 2004;13:215–22.CrossRef
24.
go back to reference Kuhn D, Kasayka RE, Lechner C. Behavioural observations and quality of life among persons with dementia in 10 assisted living facilities. Am J Alzh Dis Other Dement. 2002;17:291–8.CrossRef Kuhn D, Kasayka RE, Lechner C. Behavioural observations and quality of life among persons with dementia in 10 assisted living facilities. Am J Alzh Dis Other Dement. 2002;17:291–8.CrossRef
25.
go back to reference Cherry B, Carpenter K, Waters C, Hawkins WW, McGrew P, Satterwhite LJ, et al. Social compatibility as a consideration in caring for nursing home residents with dementia. Am J Alzh Dis Other Dement. 2008;23:430–8.CrossRef Cherry B, Carpenter K, Waters C, Hawkins WW, McGrew P, Satterwhite LJ, et al. Social compatibility as a consideration in caring for nursing home residents with dementia. Am J Alzh Dis Other Dement. 2008;23:430–8.CrossRef
26.
go back to reference Boekhorst S, Depla MFIA, de Lange J, Pot AM, Eefsting JA. The effects of group living homes on older people with dementia: a comparison with traditional nursing home care. Int J of Geriatr Psych. 2009;24:970–8.CrossRef Boekhorst S, Depla MFIA, de Lange J, Pot AM, Eefsting JA. The effects of group living homes on older people with dementia: a comparison with traditional nursing home care. Int J of Geriatr Psych. 2009;24:970–8.CrossRef
27.
go back to reference Funaki Y, Kaneko F, Okamura H. Study on factors associated with changes in quality of life of demented elderly persons in group homes. Scand J Occup Ther. 2005;12:4–9.CrossRefPubMed Funaki Y, Kaneko F, Okamura H. Study on factors associated with changes in quality of life of demented elderly persons in group homes. Scand J Occup Ther. 2005;12:4–9.CrossRefPubMed
28.
go back to reference Annerstedt L. An attempt to determine the impact of group living care in comparison to traditional long-term care on demented elderly patients. Aging (Milano). 1994;6:372–80. Annerstedt L. An attempt to determine the impact of group living care in comparison to traditional long-term care on demented elderly patients. Aging (Milano). 1994;6:372–80.
29.
go back to reference Van Zadelhoff E, Verbeek H, Widdershoven G, van Rossum E, Abma T. Good care in group home living for people with dementia: experiences of residents, family and nursing staff. J Clin Nrs. 2011;20:2490–500.CrossRef Van Zadelhoff E, Verbeek H, Widdershoven G, van Rossum E, Abma T. Good care in group home living for people with dementia: experiences of residents, family and nursing staff. J Clin Nrs. 2011;20:2490–500.CrossRef
30.
go back to reference Wolfs CA, de Vugt ME, Verkaaik M, Haufe M, Verkade PJ, Verhey FR, et al. Rational decision-making about treatment and care in dementia: a contradiction in terms? Pat Ed Counsel. 2012;87:43–8.CrossRef Wolfs CA, de Vugt ME, Verkaaik M, Haufe M, Verkade PJ, Verhey FR, et al. Rational decision-making about treatment and care in dementia: a contradiction in terms? Pat Ed Counsel. 2012;87:43–8.CrossRef
31.
go back to reference Viloria Jiménez MA, Chung Jaén M, Vigara García M, Barahona-Alvarez H. Decision-making in older people with dementia. Rev Clin Geront. 2013;23:307–16.CrossRef Viloria Jiménez MA, Chung Jaén M, Vigara García M, Barahona-Alvarez H. Decision-making in older people with dementia. Rev Clin Geront. 2013;23:307–16.CrossRef
32.
go back to reference Boyle G. Recognising the agency of people with dementia. Disabil Soc. 2014;29:1130–44.CrossRef Boyle G. Recognising the agency of people with dementia. Disabil Soc. 2014;29:1130–44.CrossRef
33.
go back to reference Moyle W, Kellett U, Ballantyne A, Gracia N. Dementia and loneliness: an Australian perspective. J Clin Nrs. 2011;20:1445–53.CrossRef Moyle W, Kellett U, Ballantyne A, Gracia N. Dementia and loneliness: an Australian perspective. J Clin Nrs. 2011;20:1445–53.CrossRef
34.
go back to reference Snyder L, Drego R. Experiences of loss and methods of coping with loss for persons with mild-moderate Alzheimer’s. Alzheim Care Quart. 2006;7:152–63. Snyder L, Drego R. Experiences of loss and methods of coping with loss for persons with mild-moderate Alzheimer’s. Alzheim Care Quart. 2006;7:152–63.
35.
go back to reference Theurer K, Wister A, Sixsmith A, Chaudhury H, Lovegreen L. The development and evaluation of mutual support groups in long-term care homes. J Applied Geront. 2014;33:387–415.CrossRef Theurer K, Wister A, Sixsmith A, Chaudhury H, Lovegreen L. The development and evaluation of mutual support groups in long-term care homes. J Applied Geront. 2014;33:387–415.CrossRef
Metadata
Title
Influencers on quality of life as reported by people living with dementia in long-term care: a descriptive exploratory approach
Authors
Wendy Moyle
Deirdre Fetherstonhaugh
Melissa Greben
Elizabeth Beattie
AusQoL group
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Geriatrics / Issue 1/2015
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-015-0050-z

Other articles of this Issue 1/2015

BMC Geriatrics 1/2015 Go to the issue