An enabling and supportive environment: Within the dementia context

People with dementia and their partners in care are often marginalized as they gradually lose friends, informal support systems shrink, and they withdraw from participation in the wider community. Obstacles to community participation can be prevented by having knowledgeable and skilled people in the community and providing local services and supports. Minimizing stigma and isolation of people with dementia is a paramount importance.

The Carpe Diem as a working example within the dementia context

The Carpe Diem house in Quebec is world renowned for its exceptional approach to dementia care. Their mission is to offer support, guidance, and services tailored to the specific needs of persons with dementia and their family members who reside in the house or who take part in their at-home support services, respite, and day program. Their services offer an alternative to the traditional ways of supporting people with dementia. Their ultimate goal is to defend the rights of a person with dementia and their families, fight against the stigma surrounding the disease and support positive change in practices with people with a loss of cognitive autonomy.

Some of the major principles underlying Carpe Diem are:

  • A person is considered before his or her illness
  • Support is oriented towards the capabilities of people and not based on deficits
  • All behaviours have meaning and as such, we need to find ways to access the world of another
  • Services are structured to fit the needs of each person not the convenience of service providers
  • Medication is not used as a means of controlling behaviour nor to fill organizational gaps
  • Some words and labels are disabling and are heavy with meaning and consequences and as such are excluded from our language

Carpe Diem is a not-for-profit community organization run by a board of directors composed mainly of relatives of people with dementia. This enables them to offer services to people based on needs identified by and for the community and not based on pre-established by public officials. The house and its team have developed an approach that supports people throughout the stages of the disease process enabling people to remain there as long as possible. They have developed, tested, and made available their model of support, care, and accommodation inspiring others to replicate its style internationally and locally. They raise awareness and inform the public about dementia and provide training and consultations for various stakeholders within the health, business, political and social services.

Ensure access to programs, services, and supports to meet the needs and preferences of older adults

Families require services and supports that are flexible and based on their needs not on administrative convenience. Services need to plan for diversity without resorting to a “one size fits all” approach for meeting differing but comparable needs. Support for those who manage their own care as well as those that access structured assistance needs to be built into all planning initiatives. The financial strains of caregiving must be addressed and support is needed for those who would prefer to direct their own services.

Carpe Diem has flexible services and programs that are structured around the needs and preferences of people with dementia, no the staff members who provide them. Persons with dementia have a choice in planning their day as there are no strict routines or schedules. The services offered are tailed to the real needs of people with dementia and their families, including accommodation, respite, day and home support, family support, counselling, group support, training, advocacy, prevention and promotion. These services are offered on an ongoing and gradual basis throughout the disease process, according to the needs of the individual and their family.

  • How are the preferences and choices of people with dementia recognized and respected?
  • How can we continue to respect the choices and preferences of persons with dementia as the disease progresses?
  • How do we support the rights of persons with dementia and their family to live as they choose, including with some risk to self?
  • How do we ensure that the capacity of persons with dementia to make decisions is being fostered and sustained?

Create a safe and secure social environment

Social isolation, stigmatization, and indifference reduce the quality of living for families experiencing dementia. Families need holistic support and to be involved in their communities in order to change society and community attitudes.

Carpe Diem ensures people with dementia have opportunities to remain engaged with their communities by offering various opportunities for activities, outings, and events that foster participation in community life. This approach helps to create a realistic perception of persons with dementia by the general public that is based on their capabilities and real lives. The staff members at Carpe Diem strive to build genuine relationships and collaborations with residents and their families based on trust which fosters safety and security.

  • How can we support persons with dementia and their families connected to the community?
  • How does out environment support and promote relationship-centred care (i.e. promote a sense of security, continuity, belonging, purpose, fulfilment, and significance to persons with dementia and their care partners). How can we improve safety and security for persons with dementia and their family members within your organization or community?

Create a safe and secure physical environment

An inaccessible and non-accommodating environment can result in persons with dementia withdrawing from the community. Appropriate homes and means of travelling are basic needs. Both the community and the individual have the right to safe and secure environments, protected from exploitation and abuse. It also requires adequate income and access to needed supports and resources from knowledgeable health and social service professionals.

Carpe Diem foster “the maintenance of mobility and functional capacity” among residents.

  • How can we exceed current accessibility standards?
  • How do we ensure that the physical environment meets or exceeds the needs of a person with dementia and their family, including consideration to the layout of group residences and community service centers in our community or organization?

Proceed to next building block: Personal, social, and system connectedness.