outlay of good dementia design would be offset by the benefits and cost-savings gained.
It has been argued that re-design of the aged care environment is key to improving care quality and cost-effective reform of the aged and health care sectors [56]. Researching and documenting the full extent of costs and benefits will provide valuable information to the many stakeholders involved in the design and delivery of dementia care. This has important implications for researchers and policy makers.
IMPLICATIONS FOR RESEARCHERS AND POLICY MAKERS
As dementia-specific design continues to progress and expand around the world, examining the full array of costs and benefits will provide valuable information to decisionmakers and stakeholders. A strong economic evidence base will help promote dementia-specific design by building both the business and human case for good design. It is increasingly important for future studies investigating the effectiveness of aspects of the built environment for people with dementia to conduct economic evaluations alongside in order to build a more robust evidence base surrounding the value of investing in specialised designs. Health economists should be consulted in the early stages of research when designing studies to ensure appropriate data to conduct a solid economic evaluation are collected.
Appropriate outcomes should be considered in light of the aim of the evaluation and the relevant decision maker. It is important to keep in mind how far-reaching the impacts may be. A particular challenge in applying economic evaluation to a degenerative disease such as dementia, is that long-term effects may be hard to capture due to the progressive deterioration of an individual’s condition. It may be worthwhile to consider a social context as well as a health context when considering outcomes as broader quality of life outcomes such as dignity, independence, and having
control over their daily lives are important contributors to quality of life for people living with dementia.(49, 57, 58) It is also important to consider the broader impact beyond the person with dementia, such as the effect on family members and carers, both formal and informal.
We do not yet have the robust evidence base needed to adequately promote the economic benefits of specialised dementia design in the built environment.
However, we do have the necessary tools and information to build this evidence base into the future.
References
1. Fleming R, Bennett K. Applying the Key Design Principles in Environments for People with Dementia: Dementia Training Australia; 2017 [Available from: https://www.
dementiatrainingaustralia.com.au/resources/environmental-design-resources-introduction/.
2. Arch M, Paddy M, Ducasse E, McManus D. Care for Frail Older People on the Anangu Pitjantjatjara Lands. In: Weeks W, Quinn M, editors. Issues Facing Australian Families Human Services Respond 3rd ed. Sydney: Longman; 2000. p. 191–6.
3. Pholeros P, Bennett K, Welke A, Arch M. Indigenous Aged Care Design Guide Dementia Training Australia, Health Habitat; 2017 [Available from: https://dta.com.au/resources/indigenous-aged-care-design-guide/.
4. Department of Families Housing Community Services and Indigenous Affairs. National Indigenous Housing Guide: Improving the Living Environment for Safety, Health and Sustainability.
Canberra: Australian Government Department of Families, Housing, Community Services and Indigenous Affairs.; 2007.
5. Fleming R, Forbes I, Bennett K. Adapting the ward for people with dementia. Sydney: NSW Department of Health; 2003.
6. Curnow E, Rush R, Maciver D, Gorska S, Forsyth K. Exploring the needs of people with dementia living at home reported by people with dementia and informal caregivers: a systematic review and Meta-analysis. 2019.
7. Ministry of Health and Wellness. Facilities registered under the Nursing Homes Registration Act 1934. 2019 [Available from: https://
www.moh.gov.jm/wp-content/uploads/2019/04/2019-gazette-list_final.pdf.
8. Building for the disabled. The Standard. July 11, 2011.
9. Kenya Gazette Supplement no.5. . The Persons with disabilities (amendment) bill. Republic of Kenya Senate Bills; 2019.
10. Brazilian Institute of Geography and Statistics. 2020 [Available from:
https://www.ibge.gov.br/en/statistics/social/population.html.
11. Ministry of Citizenship. Result of Mapping Good Practices in Actions aimed at Improving the Quality of Life of the Elderly Population 2020 [Available from: https://www.gov.br/cidadania/
pt-br/acoes-e-programas/brasil-amigo-da-pessoa-idosa/
resultado-do-mapeamento-de-boas-praticas-em-acoes-voltadas-para-a-melhoria-da-qualidade-de-vida-da-populacao-idosa.
12. Alzheimer’s Disease International. Policy Brief for Heads of Government on the Global Impact of Dementia 2013–2050 2013 [Available from: https://www.alz.co.uk/research/
GlobalImpactDementia2013.pdf.
13. Alzheimer’s WA. Dementia Enabling Environments: Alzheimer’s WA; [Available from: http://www.enablingenvironments.com.au/.
14. Barrett P, Sharma M, Zeisel J. Optimal spaces for those living with dementia: principles and evidence. Building Research and Information. 2019;47(6):734–46.
15. Dawson A, Bowes A, Kelly F, Velzke K, Ward R. Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach. BMC geriatrics. 2015;15:59.
16. Soril LJ, Leggett LE, Lorenzetti DL, Silvius J, Robertson D, Mansell L, et al. Effective use of the built environment to manage behavioural and psychological symptoms of dementia: A systematic review. PloS one. 2014;9(12).
17. Soilemezi D, Drahota A, Crossland J, Stores R. The role of the home environment in dementia care and support: Systematic review of qualitative research. Dementia. 2017:1471301217692130.
18. E. A. Falls in patients with dementia. Harefuah. 2015;154:323–38.
19. United Nations. Living arrangements of older persons around the world. 2019. Report No.: Population Facts, No. 2019/2.
20. Marquardt G, Bueter K, Motzek T. Impact of the design of the built environment on people with dementia: an evidence-based review. HERD: Health Environments Research & Design Journal.
2014;8(1):127–57.
21. Calkins MP. From Research to Application: Supportive and Therapeutic Environments for People Living With Dementia.
Gerontologist. 2018;58:S114-S28.
22. Marquardt GP, Bueter KMA, Motzek TM. Impact of the design of the built environment on people with dementia: an evidence-based review. HERD. 2014;8.
23. Prince M, Wimo A, Guerchet M, Ali GC, Wu YT, Prina M, et al. World Alzheimer Report 2015: The global impact of dementia: An analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International; 2015.
24. International Monetary Fund. World Economic Outlook Database October 2019, [Available from: https://www.imf.org/external/
pubs/ft/weo/2019/02/weodata/index.aspx.
25. International Monetary Fund. World Economic Outlook Database, October 2019. 2019.
26. Suhrcke M, Nugent RA, Stuckler D, Rocco L. Chronic Disease: An Economic Perspective. London: Oxford Health Alliance; 2006.
27. Drummond M, Schulpher M, Torrance G, O’Brien B, Stoddart G.
Methods for the economic evaluation of health care programmes.
3rd ed. New York, NY: Oxford University Press; 2005.
28. Sheehan B. Assessment scales in dementia. Ther Adv Neurol Disord. 2012;5(6):349–58.
29. World Health Organisation (WHO). Dementia 2019 [Available from:
http://www.who.int/news-room/fact-sheets/detail/dementia.
30. Brazier J, Ratcliffe J, Salomon J, Tsuchiya A. Measuring and valuing health benefits for economic evaluation: OXFORD university press;
2016.
31. Dow J, Robinson J, Robalino S, Finch T, McColl E, Robinson L.
How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures.
PLoS ONE. 2018;13(3).
32. Li L, Nguyen K-H, Comans T, Scuffham P. Utility-Based Instruments for People with Dementia: A Systematic Review and Meta-Regression Analysis. Value in Health. 2018;21(4):471–81.
33. Shearer J, Green C, Ritchie C, Zajicek J. Health State Values for Use in the Economic Evaluation of Treatments for Alzheimer’s Disease.
Drugs & Aging. 2012;29(1):31–43.
34. Mulhern B, Rowen D, Brazier J, Smith S, Romeo R, Tait R, et al.
Development of DEMQOL-U and DEMQOL-PROXY-U: generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health technology assessment (Winchester, England). 2013;17(5).
35. Comans TA, Nguyen K-H, Mulhern B, Corlis M, Li L, Welch A, et al. Developing a dementia-specific preference- based quality of life measure (AD-5D) in Australia: a valuation study protocol. BMJ Open. 2018;8(1):e018996.
36. Ratcliffe J, Cameron I, Lancsar E, Walker R, Milte R, Hutchinson CL, et al. Developing a new quality of life instrument with older people for economic evaluation in aged care: study protocol. BMJ Open.
2019;9(5):e028647.
37. Trigg R, Jones RW, Skevington SM. Can people with mild to moderate dementia provide reliable answers about their quality of life? Age and Ageing. 2007(36):663–9.
38. Berwig M, Leicht H, Gertz HJ. Critical evaluation of self-rated quality of life in mild cognitive impairment and Alzheimer’s disease – further evidence for the impact of anosognosia and global cognitive impairment. The Journal of Nutrition, Health & Aging.
2009;13(3):226–30.
39. Conde-Sala JL, Turró-Garriga O, Garre-Olmo J, Vilalta-Franch J, Lopez-Pousa S. Discrepancies regarding the quality of life of patients with alzheimer’s disease: A three-year longitudinal study. J Alzheimer’s Dis. 2014;39(3):511–25.
40. Trigg R, Jones RW, Knapp M, King D, Lacey LA, Groups D-I. The relationship between changes in quality of life outcomes and progression of Alzheimer’s disease: results from the dependence in AD in England 2 longitudinal study. International journal of geriatric psychiatry. 2014;30(4):400–8.
41. Arons AM, Krabbe PF, Scholzel-Dorenbos CJ, van der Wilt GJ, Rikkert MG. Quality of life in dementia: a study on proxy bias. BMC Med Res Methodol. 2013;13(110).
42. Romhild J, Fleischer S, Meyer G, Stephan A, Zwakhalen S, Leino-Kilpi H, et al. Inter-rater agreement of the Quality of Life-Alzheimer’s Disease (QoL-AD) self-rating and proxy rating scale:
secondary analysis of RightTimePlaceCare data. Health and Quality of Life Outcomes. 2018;16(1):131.
43. Pickard AS, Knight SJ. Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Med Care. 2005;43(5):493–9.
44. Jönsson L, Andreasen N, Kilander L, Soininen H, Waldemar G, Nygaard H, et al. Patient- and proxy-reported utility in Alzheimer disease using the EuroQoL. Alzheimer Disease and Associated Disorders. 2006;20(1):49–55.
45. Sheehan BD, Lall R, Stinton C, Mitchell K, Gage H, Holland C, et al. Patient and proxy measurement of quality of life among general hospital in-patients with dementia. Aging & Mental Health.
2012;16(5):603–7.
46. Sitoh YY, Lau TC, Zochling J, Cumming RG, Lord SR, Schwarz J, et al. Proxy assessment of health-related quality of life in the frail elderly [1]. Age and Ageing. 2003;32(4):459.
47. Beerens HC, Zwakhalen SMG, Verbeek H, Ruwaard D, Hamers JPH.
Factors associated with quality of life of people with dementia in long-term care facilities: A systematic review. International Journal of Nursing Studies. 2013;50(9):1259–70.
48. Gomez-Gallego M, Gomez-Garcia J, Ato-Lozano E. Addressing the bias problem in the assessment of the quality of life of patients with dementia: determinants of the accuracy and precision of the proxy ratings. The journal of nutrition, health & aging.
2015;19(3):365–72.
49. Easton T, Milte R, Crotty M, Ratcliffe J. Where’s the evidence? A systematic review of economic analyses of residential aged care infrastructure. BMC Health Services Research. 2017;17(1).
50. Salkeld G, Cumming RG, Thomas M, Szonyi G, Westbury C, O’Neill E. The cost effectiveness of a home hazard reduction program to reduce falls among older persons. Australian and New Zealand Journal of Public Health. 2000;24(3):265–71.
51. Rodiek S, Boggess MM, Lee C, Booth GJ, Morris A. Can Better Outdoor Environments Lead to Cost Benefits in Assisted Living Facilities through Increased Word-of-Mouth Referrals? HERD:
Health Environments Research & Design Journal. 2013;6(2):12–26.
52. Chenoweth L, Forbes I, Fleming R, King MT, Stein-Parbury J, Luscombe G, et al. PerCEN: A cluster randomized controlled trial of person-centered residential care and environment for people with dementia. Int Psychogeriatr. 2014;26(7):1147–60.
53. Smith SC, Lamping DL, Banerjee S, Harwood R, Foley B, Smith P, et al. Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health technology assessment (Winchester, England). 2005;9(10):1.
54. Dyer SM, Liu E, Gnanamanickam ES, Milte R, Easton T, Harrison SL, et al. Clustered domestic residential aged care in australia:
Fewer hospitalisations and better quality of life. Medical Journal of Australia. 2018;208(10):433–8.
55. Harrison SL, Kouladjian O’Donnell L, Milte R, Dyer SM, Gnanamanickam ES, Bradley C, et al. Costs of potentially inappropriate medication use in residential aged care facilities.
BMC Geriatrics. 2018;18(1):9–10.
56. Eckermann S, Eckermann S, Phillipson L, Phillipson L, Fleming R, Fleming R. Re-design of Aged Care Environments is Key to Improved Care Quality and Cost Effective Reform of Aged and Health System Care. Applied Health Economics and Health Policy.
2019;17(2):127–30.
57. Ratcliffe J, Lancsar E, Flint T, Kaambwa B, Walker R, Lewin G, et al. Does one size fit all? Assessing the preferences of older and younger people for attributes of quality of life. Quality of Life Research. 2017;26(2):299–309.
58. Milte CM, Walker R, Luszcz MA, Lancsar E, Kaambwa B, Ratcliffe J. How important is health status in defining quality of life for older people? An exploratory study of the views of older South Australians. Appl Health Econ Health Policy. 2014;12.