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Dementia Villages - Position Statement

October 2019

Background

More than 419,000 Canadians older than 65 years of age have been diagnosed with dementia.1 In addition, an estimated 16,000 Canadians less than 65 years of age are living with dementia and many other Canadians have the condition but have not been diagnosed.1,2 Most people with early-to-moderate dementia can remain in their own homes with support from family, friends, or home care services.3 But people living with advanced dementia need more care and caregiver burnout often results in the person with dementia being placed in long-term care.3 About one-third of all Canadians with dementia live in long-term care facilities.4 Of those with advanced dementia, most (86%) live in long-term care.5 With the aging population and population growth, the number of Canadians living with dementia is expected to almost double within the next 20 years.6 There is an acknowledged need for more long-term care spaces to support the growing number of individuals with dementia who will require residential care in the coming years.

Dementia villages (the Hogeweyk Care Concept) are a relatively new type of residential care facility for people living with advanced dementia. Inspired by the original De Hogeweyk village in the Netherlands, dementia villages focus on providing person-centred care in small-scale, non-institutional, home-like settings. The village is a secure environment that supports people with advanced dementia in participating in activities of everyday life, allowing them to live life as fully and normally as possible.7-10

Dementia villages have some similarities with other innovative models of dementia care, such as the US Green House Project and European small-scale, group home residential care. In addition to recognizing the importance of environmental design in meeting the needs of people with dementia,9,11-13 elements incorporated into these types of care include:

  • person-centred care that allows the individual as much autonomy as possible
  • small-scale, home-like group living to encourage social interaction and participation in meaningful activities of daily living
  • access to outdoor space and gardens.

Objective

The objective of this position statement is to provide advice to jurisdictions interested in implementing the dementia village concept of care within the public health care system in Canada.

Methods

CADTH’s Health Technology Expert Review Panel, or HTERP, developed this position statement on dementia villages (the Hogeweyk Care Concept) based on information summarized in a CADTH horizon scanning bulletin.14 The bulletin included published and grey literature on dementia villages and other innovative models of dementia care, consultations with geriatricians and others involved in dementia care in Canada, peer review by clinical experts, and information provided by two of the founders of De Hogeweyk.

HTERP members reviewed the information and developed this consensus-based position statement through discussion and deliberation. Further information on the HTERP process is available on the HTERP page of the CADTH website.

Statement

HTERP advises that:

  • Although further research and evaluation are needed, dementia villages based on the Hogeweyk Care Concept may have a place within the continuum of dementia care in Canada.
  • Built environment (such as creating home-like environments with access to outdoor and common spaces) and living environment (such as encouraging social activity and meaningful participation in daily household activities) characteristics should be considered when developing or funding residential care facilities for individuals with dementia who can no longer be supported in their own homes.
  • Before adopting new design standards or models for residential care, decision-makers should consider the potential impacts on equity of access.

Rationale

  • The Hogeweyk Care Concept is grounded in the belief that, with proper supportive care and within a secure and enabling environment, individuals in relatively advanced stages of dementia can experience a good quality of life and meaningfully participate in their communities.7 Dementia villages also advance the value of integration, consistent with the ethical value of solidarity with individuals with dementia.
  • There is evidence of improved staff satisfaction and resident outcomes in other similar dementia care models compared with traditional long-term care.15-21 Many design elements of the Hogeweyk Care Concept and other novel dementia care models, including home-like environments and access to outdoor and common spaces, are supported by published evidence.13
  • At present, there is insufficient objective evidence on which to conclude that the Hogeweyk Care Concept results in improved clinical or quality of life outcomes for residents, nor are there any robust program evaluations assessing efficiency or cost-effectiveness.

Considerations

  • Implementation considerations include costs, staffing (including staffing ratios, staff skills, and training), volunteers (their roles and training), equity, using standardized tools to define the severity of dementia and the level of functional ability, and consideration of the characteristics of the people living with dementia in determining the evidence of effectiveness.
  • Costs are an important implementation consideration. There are likely to be incremental capital costs associated with replicating the De Hogeweyk concept, both because of the larger footprint and construction of non-traditional resident spaces — such as stores, cafes, and outdoor spaces — suitable for the Canadian environment.
  • Additional operational costs may also be expected, as fully incorporating all aspects of the Hogeweyk dementia village concept would require additional staff and volunteers to ensure that residents with advanced dementia have the help they need to participate in the available activities.
  • Additional training for all staff and volunteers is also required. Training and education are key to achieving the necessary culture change to provide person-centred dementia care, and new skill sets may be required of staff.
  • The unique living environment of the Hogeweyk Care Concept is appealing to many. Dementia villages may be considered as part of a care continuum for those with dementia. Other options along this continuum include:
    • robust home and community support for community-dwelling individuals with dementia and their caregivers
    • assisted-living options for those with early-stage dementia who cannot be supported in their own homes
    • traditional residential long-term care for individuals with advanced dementia, including those who prefer this option or who are not well-suited to a dementia village environment for health or behavioural reasons
    • access to palliative and end-of-life care, whether provided at home, in an acute care facility, or in a residential care environment.
  • When adopting any novel care concept, vision and commitment from leadership is essential to ensuring the long-term continuation of changes in care.
  • Conceptually, dementia villages are highly aligned with existing dementia strategies at the provincial and national levels in Canada. The Public Health Agency of Canada released a national dementia strategy in 2019 which calls for evidence on person-centred “… effective innovative and alternative care models that support quality of life…” and for “… innovations and strategies that enhance integrated dementia care, focused on the safety, quality of care and quality of life of people living with dementia in long-term care.”1
  • In Canada, several dementia village developments, both private and publicly funded, are in the planning or construction phases. One village (a private facility) opened in Langley, British Columbia, in August 2019. As experience grows with dementia villages in Canada, there is an opportunity to assemble evidence to help determine how best to operationalize this type of care within the context of the Canadian health care system and to measure outcomes.
  • Various metrics for measuring quality and safety in long-term care could be used to compare outcomes in dementia villages with those in more traditional care settings. For example, the Canadian Institute for Health Information reports publicly on indicators of appropriate and effective care (e.g., restraint use, potentially inappropriate use of antipsychotic medications), safety (e.g., falls within the last 30 days, worsened pressure ulcer), and health status (e.g., depressive mood, physical functioning, and experiencing pain) in long-term care.22 Measuring and reporting on these comparable outcomes is contingent upon systematic data collection using standardized tools, such as the Resident Assessment Instrument-Minimum Dataset (RAI-MDS).23,24 Other outcomes that would be important to collect to better understand the effectiveness of emerging dementia care models include impacts on health system resource utilization and measures of resident and family satisfaction

References

  1. Public Health Agency of Canada. A dementia strategy for Canada: together we aspire. Ottawa (ON): Government of Canada; 2019: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html Accessed 2019 Jun 17.
  2. Dementia numbers in Canada. 2019; http://alzheimer.ca/en/Home/About-dementia/What-is-dementia/Dementia-numbers. Accessed 2019 Sep 12.
  3. Standing Senate Committee on Social Affairs, Science and Technology. Dementia in Canada: a national strategy for dementia-friendly communities. Ottawa (ON): Senate of Canada; 2016: https://alzheimer.ca/sites/default/files/files/national/advocacy/soci_6threport_dementiaincanada-web_e.pdf. Accessed 2019 May 15.
  4. Dudevich A, Husak L, Johnson T, Chen A. Safety and quality of care for seniors living with dementia. Healthc Q.21(3):12-15.
  5. Population Health Expert Panel. Prevalence and monetary costs of dementia in Canada. Toronto (ON): Alzheimer Society of Canada, in collaboration with the Public Health Agency of Canada; 2016: https://alzheimer.ca/sites/default/files/files/national/statistics/prevalenceandcostsofdementia_en.pdf. Accessed 2019 Apr 30.
  6. Dementia in Canada. Ottawa: Canadian Institute for Health Information; 2018: https://www.cihi.ca/en/dementia-in-canada. Accessed 2019 Feb 6.
  7. van Hal E. A vision and the outcome - De Hogeweyk (The Dementia Village). CLPNA Think Tank: Planning the Future of Seniors' and Dementia Care; Oct 23, 2014; Edmonton (AB).
  8. Peoples H, Pedersen LF, Moestrup L. Creating a meaningful everyday life: perceptions of relatives of people with dementia and healthcare professionals in the context of a Danish dementia village. Dementia (London, England). 2018:[epub ahead of print].
  9. Jenkins C, Smythe A. Reflections on a visit to a dementia care village. Nurs Older People. 2013;25(6):14-19.
  10. Haeusermann T. Professionalised intimacy: how dementia care workers navigate between domestic intimacy and institutional detachment. Sociol Health Illn. 2018;40(5):907-923.
  11. Ausserhofer D, Deschodt M, De Geest S, van Achterberg T, Meyer G, Verbeek H, et al. "There's No Place Like Home": a scoping review on the impact of homelike residential care models on resident-, family-, and staff-related outcomes. J Am Med Dir Assoc. 2016;17(8):685-693.
  12. de Boer B, Beerens HC, Katterbach MA, Viduka M, Willemse BM, Verbeek H. The physical environment of nursing homes for people with dementia: traditional nursing homes, small-scale living facilities, and Green Care farms. Healthcare (Basel, Switzerland). 2018;6(4).
  13. Chaudhury H, Cooke HA, Cowie H, Razaghi L. The influence of the physical environment on residents with dementia in long-term care settings: a review of the empirical literature. Gerontologist. 2018;58(5):e325-e337.
  14. Harris J, Topfer LA, Ford C. Dementia villages: innovative residential care for people with dementia. Ottawa: CADTH; 2019.
  15. Sharkey SS, Hudak S, Horn SD, James B, Howes J. Frontline caregiver daily practices: a comparison study of traditional nursing homes and the Green House project sites. J Am Geriatr Soc. 2011;59(1):126-131.
  16. Kane RA, Lum TY, Cutler LJ, Degenholtz HB, Yu TC. Resident outcomes in small-house nursing homes: a longitudinal evaluation of the initial green house program. J Am Geriatr Soc. 2007;55(6):832-839.
  17. Lum TY, Kane RA, Cutler LJ, Yu TC. Effects of Green House nursing homes on residents' families. Health Care Financ Rev. 2008;30(2):35-51.
  18. Jenkens R, Sult T, Lessell N, Hammer D, Ortigara A. Financial implications of the Green House Model. Seniors Hous Care J.19(1):3-21.
  19. Grabowski DC, Afendulis CC, Caudry DJ, O'Malley AJ, Kemper P. The impact of Green House adoption on medicare spending and utilization. Health Serv Res. 2016;51(Suppl 1):433-453.
  20. Zimmerman S, Bowers BJ, Cohen LW, Grabowski DC, Horn SD, Kemper P. New evidence on the Green House Model of Nursing Home Care: Synthesis of findings and implications for policy, practice, and research. Health Serv Res. 2016;51 Suppl 1:475-496.
  21. Afendulis CC, Caudry DJ, O'Malley AJ, Kemper P, Grabowski DC. Green House adoption and nursing home quality. Health Serv Res. 2016;51(Suppl 1):454-474.
  22. Health system performance reporting in long-term care: information sheet. Ottawa: Canadian Institute for Health Information; 2015: https://www.cihi.ca/en/ltc_indicator_rep_en.pdf. Accessed 2019 Jan 10.
  23. Alberta Health. RAI-MDS 2.0 quality indicator interpretation guide. Edmonton, AB 2015.
  24. LTC indicator review report: the review and selection of indicators for long-term care public reporting. Toronto (ON): Health Quality Ontario; 2015: https://www.hqontario.ca/Portals/0/documents/system-performance/ltc-indicator-review-report-november-2015.pdf. Accessed 2019 Feb 10.

Appendix 1: The Health Technology Expert Review Panel

The Health Technology Expert Review Panel, or HTERP, consists of up to seven core members appointed to serve for all topics under consideration during their terms of office, and up to five expert members appointed to provide their expertise for a specific topic. The core members include health care practitioners and other individuals with expertise and experience in evidence-based medicine, critical appraisal, health technology assessment, bioethics, and health economics. One public member is also appointed to the core panel to represent the broad public interest.

HTERP is an advisory body to CADTH and is convened to develop guidance or recommendations on non-drug health technologies to inform a range of stakeholders within the Canadian health care system. Further information regarding HTERP is available here.

Health Technology Expert Review Panel Core Members

Dr. Hilary Jaeger (Chair)

Dr. Sandor Demeter

Dr. Lawrence Mbuagbaw 

Dr. Jeremy Petch

Dr. Lynette Reid

Ms. Tonya Somerton

Dr. Jean-Eric Tarride

Expert Member

Dr. Jenny Basran

Conflict of Interest

Conflicts of interest of HTERP core members are posted on the CADTH website: https://www.cadth.ca/collaboration-and-outreach/advisory-bodies/health-technology-expert-review-panel.

Conflict of interest guidelines are posted on the CADTH website.

About this Document

Cite As: Dementia Villages — Position Statement. Ottawa: CADTH; 2019 Oct. (CADTH Health Technology Expert Review Panel position statement).

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