Home is much more than a building, it’s a place where comfort, safety, love and care can be found.  Home is a place where we can relax and be our true selves.

While most people with dementia in Canada continue to live at home as their condition progresses, some will require the specialized supports often only available in congregate care settings, like long-term care homes.

A medicalized focus on physical health and the binary narrative of either ‘aging in place’ or ‘residential care’ has hindered development of new concepts of home that include diverse environments and meet unique needs.

It’s time to work together with people with dementia and care partners to co-design a continuum of support and care options that respect individual preferences and aspire to meet a broader range of the needs we all share, including needs for meaning, purpose, autonomy, and nourishing relationships.

Dementia Connections spoke with experts from the Home Reimagined panel discussion hosted at AGE-WELL’s recent conference to explore their perspectives on the role design, technology and new definitions might play in broadening the concept of ‘home’ for people living with dementia.

New Definitions 

“COVID really brought to light systemic issues in the long-term care sector, and yet we're still not seeing the changes needed to ensure safe and dignified spaces. It is time to look more closely at improving nursing homes, but also at keeping people in their communities with more support", says Dr. Vivian Stamatopoulos, an Associate teaching professor at Ontario Tech University, who co-moderated the Home Reimagined panel discussion.

“We're not necessarily meeting the needs of older adults with what we're doing currently in Canada” agrees panel co-moderator Dr. Charlene Chu, an Assistant Professor at the University of Toronto and the KITE Research Institute University Health Network, “Currently, access to services to extend independence are very limited and not equitably provided. With demand increasing we need to redefine home and to create a broader a spectrum of supports to help people age in place.”

“I think the primary underlying issue is that our society is very ageist”, says Chu "We currently have a paradigm where it is okay to build walls around older adults and to separate them from their communities and from society more broadly. We put them into antiquated buildings without access to Internet or assistive devices and technologies that every one of us have access to. That norm fundamentally needs to change.”

People want options other than long-term care, and that will take new ways of thinking about new ways of aging.

– Dr. Charlene Chu

New ideas are beginning to shift the status quo.

"There will always be a need for the 24/7 care provided by institutional long-term care, but we can reduce their capacity by providing more supports in the community”, Stamatopoulos asserts. “Options like naturally occurring retirement communities (NORCS) and intergenerational home sharing models can help to preserve the intergenerational fabric of our communities and keep older adults at home for longer". She observes that when younger people see how older adults are treated, they become invested to try to make positive change.

The Canada Home Share program is another example of how intergenerational connections create reciprocal benefits. “The program pairs students to live with older adults in the community, on a temporary basis.  It's a trade-off, where a student receives reduced rent and in turn provides practical supports for the older adult, like taking out the garbage or snow shoveling.” Yet, small scale programs require coordination and funding to scale up nationally and meet fast growing needs for sustainable housing and support options for older adults and people with dementia.

“This is a problem of politicians, of political will, frankly", says Chu, "Politicians seem to be avoiding dealing with the fact that a fourth of our entire Canadian population is going to be a senior by 2040. It’s infuriating because we saw during COVID that our current systems are not prepared to provide safe and dignified care for older adults. People want options other than long-term care, and that will take new ways of thinking about new ways of aging.”

Technology 

AgeTech refers to technologies that promote independence, health and quality of life for older adults, including people living with dementia and care partners.

Both Paul Lea and Jim Mann report using technology is essential to maintaining their independence in everyday life, and to stay connected to the wider world.

“I'm 72 now, I live well and I use technology,” says panelist Lea, who was diagnosed with dementia in 2010. He reports that using automated door locks has brought him peace of mind, and that use of voice activated technology - an Alexa device - to control lights and enable reminders makes life alone at home easier. “She doesn’t do dishes, but she’s very polite”, Lea jokes.

Mann, who was diagnosed with early onset Alzheimer’s disease in 2007, prefers the support of the reminders generated through his smart phone. “Technology still has that image in people's minds that older adults don't use technology and especially that people with dementia can’t use technology”, Mann says, “ I think you have to seek out options through groups like AGE-WELL that will perhaps help you in some way or be of interest to you. Technology has been a very helpful thing for me.”

Design

“Every design choice must be made to favour quality of life" says panelist Frank van Dillen, a world-renowned expert in the field of holistic design and the founder of Dementia Village Associates (DVA), designers of the very first dementia village, The Hogeweyk, in the Netherlands. “It’s a combination of the ‘software’ - the vision and values of the residents and organization, together with the ‘hardware’ - the built environment and business case, that enables a holistic view when designing environments for people with dementia”.

A dementia village is a humanistic paradigm shift. It is not a hospital, it’s about hospitality.

– Frank van Dillen, DVA Dementia Village Associates

Turning away from design that serves a medical model of care and toward built environments that prioritize social inclusion and support autonomy is the approach Van Dillen and DVA have championed in more than 70 design projects worldwide. DVA’s consultancy services include development and technical advice, as well as building business cases for social inclusion.

“A dementia village is a humanistic paradigm shift” says Van Dillen, “It is not a hospital, it’s about hospitality."  He notes that no single dementia village design will work in every context. “What we started in the Netherlands won’t work in Australia and can’t be copied and pasted into Germany or Canada. When we begin projects, we spend time with each organization to understand some of the subtle but central foundations of their operations – the beliefs, ideals and values – that are at their core”. This approach leads to (re)development of care homes that are responsive to the needs of local people.

On the architectural side, DVA’s approach is informed by the Dutch social housing movement of the early 1900's that aimed to engage people to look after each other. “It’s about building a community, a small village that enables a new social network for people with dementia. Creating an inclusive setting to encourage and support social interaction for numbers of people within shared spaces, while maintaining smaller scale households of no more than eight people." says Van Dillen, "Then, it’s about the landscaping and other elements in the built environment that reinforce social inclusion."

In dementia villages, every aspect of the design is intended to reinforce person centered care.  “Start with a human approach; there is no formula,” says Van Dillen. Beyond age-friendly principles like increasing colour contrasts and avoiding shiny floors, Van Dillen says good design for people with dementia is mostly about common sense. “It’s about creating a living environment that people can recognize and respond to positively.  If the furniture, the wallpaper and the flooring is home-like, people will recognize the room as a safe a place to relax.”

In addition to houses, dementia villages include amenities like theaters, supermarkets, restaurants and bars that create comfortable social environments for family and friends to participate in village life; the social HUB’s as he calls them. “It’s fun and relaxing to sit in a restaurant, rather than a multipurpose room, with your family member”, says Van Dillen, “You are focussing on the pleasure of being together, not the problem of dementia.”