There are many diseases that result in a gradual cognitive decline that eventually becomes so significant and highly debilitating, it severely impacts the way an individual goes about their daily life and interacts with the world. Dementia is an umbrella term used to describe the symptoms and signs of this progressive decline of cognitive functioning.
The symptoms may include difficulties with memory–misplacing items, struggling with words, figuring out how to do regular day to day tasks that were once easy, getting lost in familiar spaces and forgetting appointments. It could include a pattern of poor judgment and decision making, like giving money or possessions away. An individual might also have difficulty controlling their emotions and experience extreme mood swings. Their personalities may change and they could also begin to lose interest in grooming, friends, family and activities they once enjoyed.
If you or someone you know is experiencing any or all of these symptoms, please get evaluated by your doctor to rule out any concerns.
According to The Alzheimer Society, in 2020 there were almost 600,000 Canadians living with the symptoms of dementia. Some of these individuals are cared for by family or private caregivers at home and others are in long term care (LTC) homes. Most LTC homes in Ontario have a separate wing for residents with severe symptoms so they can receive specialized care.
In Canada (and around the world), some LTC homes have been implementing the Butterfly Model of Care for individuals with dementia. This model was developed by a UK based organization called Meaningful Care Matters and focuses on providing a “person-centered” approach to care. Caregivers work to find and maintain personal connections between staff, family and residents and provide care in a way that allows the individual to retain their dignity and sense of self.
The idea of person centered dementia care was first pioneered by Tom Kitwood who wrote the book Dementia Reconsidered: The Person Comes First (1997). He recognized that individuals with dementia could more effectively be cared for if care providers didn’t just focus on the dementia symptoms but really took the time to focus on the individual and building relationships and connections. He advocated for a model that was less about the bottom line and more about enhancing the quality of life for individuals with dementia. At the time his book was published, this type of care did not exist in long term care homes.
In Ontario, the model was first implemented at Malton Village LTC in the Region of Peel in 2017. It has now been deployed in the dementia units of almost twenty long term care homes across the province. Unfortunately, adoption has been slow partly because of the pandemic but also due to ongoing challenges with staffing and the cost of implementation. However, the fact that LTC homes and even hospitals continue to introduce this care model, suggests that it could eventually gain momentum. The existing successful working applications will hopefully be used as instructive examples, and a standard to support our aging population.
Each butterfly model that is implemented is unique to the particular environment, but there are some common elements that are applied in all settings:
- Regular senior and dementia care in an LTC environment tends to be clinical, task and time oriented–medication given, bed transfers completed, meals completed, baths completed, etc. In contrast, instead of strict, time based routines, the atmosphere in the butterfly model is more relaxed and focused on what the resident needs at that moment. It is more about creating the feeling of being at home with family, versus in a hospital-like setting with staff.
- While clinical care and the treatment of the symptoms will always be important, emotional care (‘feelings matter most’) is equally important in this model.
- The physical environment is transformed from a long term care home institution to smaller “households,” to make it feel more like a private home. Butterfly households typically have brightly painted or mural covered walls. The common spaces and rooms are decorated with pictures and memorabilia that are significant to the residents and most importantly, makes it feel like home.
- There are stations throughout the area focused on particular activities or hobbies like a dress-up area with hats and purses. This is meant to engage the individuals who traverse these areas and give them opportunities to reminisce, to have their senses stimulated and to provide a sense of purpose while they engage in their home environments.
- Meals are eaten family-style and the dining areas are less institutional with a focus on a sensory experience.
- Care providers (nurses and personal support workers) are recruited with a focus on strong emotional intelligence. They receive specific training that helps them to dismantle the traditional approach to institutional care and focus more on compassion, human connection, building and maintaining relationships, and an acknowledgement that the well-being of the individual is the primary measurement of good quality dementia care.
- Families are actively involved so that they can be part of the household.
Quantitatively, the measurable goals with this care model are typically a reduction in the use of medications to manage behaviours and a reduction in the number of falls. In an era where staffing is a significant challenge in long term care homes, Butterfly homes have experienced reduced staff turnover and absenteeism.
Qualitatively, there is evidence that with this model, individuals with dementia have an improved quality of life. They are better able to interact with the world in a way that allows them to stay connected and engaged, instead of becoming completely lost in themselves. The caregiver (staff and family) experience is also improved.
According to The Alzheimer Society’s 2022 Landmark Study, there will be about a million Canadians living with dementia by the year 2030. That statistic could eventually represent you or someone you know and love. If this is the case, the Butterfly model represents hope. As we age with the risk of dementia, we and our loved ones can hopefully look forward to being taken care of in environments that are more like home and less like institutions, where our individual needs and interests are considered and where we will not be forgotten, as we forget.
–Tymbi Gonsalves, CF Volunteer