Thank you, Mr. Chair, and good afternoon to members of the health committee.
The Alzheimer Society of Canada very much appreciates the opportunity to bring the perspective of how dementia can play a role in violent incidents between care providers and clients or residents. Violence or aggression between care providers and people with dementia in any setting is an important issue. We tend to normalize aggression in dementia, which can lead us to incorrectly think there's nothing we can do about it. Violence can be prevented, and today I will submit recommended strategies to do so.
We are privileged that dementia in Canada is now being addressed through our first national dementia strategy, and not a minute too soon. It's estimated that there are over 500,000 Canadians living with dementia, and this number is estimated to grow to nearly one million within the next 15 years.
As we discuss violence, it's important to remember that the words we choose to use are powerful. They can shape perceptions and increase or decrease stigma, especially when labels such as “violent” are used to describe a person with dementia. While the behaviour of a person with dementia may manifest itself as being violent, it's important to remember that their behaviour is often a response to what's happening around them.
Dementia is an overall term for a set of symptoms that's caused by disorders affecting the brain. Many of us know about diseases such as Alzheimer’s disease. While any abilities lost with dementia will not come back, the pursuit of meaningful relationships and activities is indeed possible.
Today I will provide this committee with brief information on the following: how disease pathology may influence aggression, structural or environmental factors that can reduce the risk of aggressive incidents, the benefits of a person- and relationship-centred rather than a task-centred approach, and the role of medications.
All behaviour has meaning and happens for a reason, although the reason may not be obvious at first. When a person with dementia behaves aggressively, it's especially important to understand what may have triggered this aggression, by considering the following.
First, the disease pathology itself may lead to aggression. People with dementia experience changes in the brain that can affect their abilities, such as language; judgment; sensory perception; and recognition of people, things and places.
Changes that happen in the brain because of the dementia may affect the person’s judgment, emotions and self-control and can contribute to aggressive behaviour. For example, damage to the front part of the brain can affect an individual’s personality and their capacity for empathy, impulse control and judgment. These are problems often seen in fronto-temporal dementia and can result in physical aggression without any obvious provocation.
Since our brains help us interpret the world around us, dementia can impair our ability to accurately assess and respond to what's happening in our environment. For example, when a care provider, whom a person with dementia does not recognize and who seems to them to be a complete stranger, approaches them to assist them in disrobing for a bath, the person’s instincts are often to resist and even to fight back. When we reflect on what we would do if approached by someone we don’t recognize who proceeds to remove our clothing, this reaction makes sense. In fact, we frequently refer to these actions as “responsive behaviours”. Therefore, ascribing a label of “violent” to a person with dementia may discourage us from looking closely at the reasons for their behaviour and seeking ways to reduce the likelihood that the person needs to react in this way.
Being mindful that one's perception is one's reality, we need to constantly try to see the world from the perspective of the person with dementia and resist the temptation to blame them for unacceptable and inappropriate behaviour, such as aggressive outbursts. This appreciation for the reality of people with dementia in no way minimizes the devastation for providers, individuals and families when aggressive incidents occur. In fact, the onus is squarely on those of us without dementia to understand the root causes of the person's actions in order to lower the risk of such incidents occurring and reoccurring.
The second issue are the structural issues that are systemic in nature that may result in aggressive incidents. If these are not addressed, we are at risk of tackling the issue of aggression in a piecemeal fashion, one client at a time . Examples of these issues include the design of the built environment. For example, long corridors that end in a dead end can leave a person with dementia, who may not have the problem-solving skills to navigate a new path by turning around, feeling cornered and trapped. Being approached by a well-meaning staff person to assist with navigation may trigger a fight-or-flight response in the person with dementia.
With regard to inappropriate and oftentimes unsafe client-staff ratios and unreasonable staff workload, as we've heard, health care providers are often rushed, unable to spend time getting to know the person with dementia and building the type of relationship that can lead to a sense of trust and safety. A person with dementia can easily become overwhelmed by demands made on them, and frequently needs more time to process what is being asked of them. When rushed and overwhelmed, a person with dementia may well respond aggressively out of frustration.
Heavy reliance on the use of agency staff can result in less continuity of staffing, thus negatively impacting the staff's ability to know each person with dementia well and develop relationships.
Lack of meaningful activities resulting in boredom and frustration. There's evidence that engagement in arts and leisure activities like music, visual arts and animal therapy is linked with a reduction in neuropsychiatric symptoms, including aggression.
The above, of course, is all predicated on truly knowing each person with dementia as a whole person. This leads us to the importance of a person- and relationship-centred approach to dementia care. The goal of this approach is to support people with dementia to experience joy and engagement and connection with others and a sense of security. The evidence is mounting that valuing the person with dementia and bringing relationships to the forefront of care, rather than relying on a task-centred approach, is beneficial for both staff and residents. This, however, requires a shift from care routines that are beneficial for staff to those that are supportive of the clients' routines and preferences, and this shift needs to be supported at the level of organizational structure so it's not piecemeal.
For example, a person with dementia who's not a morning person will likely resist staff efforts to get her up and dressed at 6 a.m. While this schedule might work for staff, given organizational demand that there be a set schedule for activities, struggling to get a person ready for the day when they are accustomed to sleeping in later will likely only result in a poor experience for both staff and client. Knowing that a Holocaust survivor is terrified of showers, for example, will help staff appreciate that a sponge bath instead of a shower will avoid triggering a catastrophic reaction. We need to free staff to creatively problem-solve with those who know the person best. That not only leads to more effective care routines, but it also reduces the likelihood of aggression.
Finally, let us turn to the role of medications. Although it's recommended to try non-pharmacological approaches first, in some cases there are times when the above will not work, and in these instances medications may be needed.
Treatment of agitation and aggression with medication should only begin with an appropriate medical diagnosis ruling out any physical condition such as infections and medication side effects or even environmental factors. When the agitation is serious and represents a risk to the person with dementia, other residents or staff, certain medications can be used with appropriate monitoring and informed consent of the person with dementia or their substitute decision-maker.
It's important to monitor the response to medications and determine if there's a reduction in the frequency and the intensity of agitation and aggressive behaviours as well as monitoring for serious adverse effects, which have a high incidence among older adults. If the resident's behaviour improves, implementing a structured, scheduled re-evaluation for tapering and discontinuation of medications is important.
What can be done to reduce the risk of aggressive incidents? We know that from the research it's most likely to result from using a combination of the following strategies.
Structural and environmental changes include adequate staffing; structural changes to the way care is delivered in client-staff ratios and staff workload; personalized care where meaningful relationships and activities can be offered, especially at high-risk times like evenings and weekends; clearing clutter and adjusting temperature and lighting; minimizing noise; providing accessible quiet areas; closely monitoring residents at risk for aggression; offering private rooms when possible; and using dementia-friendly signage throughout the home, clearly labelling each bedroom to avoid residents entering someone else's room.
Education about dementia is also key for residents, families, staff and management. We need to educate management and staff on dementia, responsive behaviours such as triggers and consequences, person- and relationship-centred care, and the importance of supporting this through organizational change to enable care to be delivered in this way. We need to educate resident and family councils, families and staff on how they can work together to reduce the risk of future incidents.
Special training programs such as P.I.E.C.E.S and GPA can help everyone learn and apply effective care strategies and techniques to prevent and manage aggressive behaviours.
Behavioural assessments include having procedures in place to conduct pre-admission behavioural evaluations to get a detailed personal history of the person with dementia, specifically asking about known risk factors.
We need to look at pain identification and management. We need to routinely assess for pain and discomfort, especially in individuals who are non-verbal, as this may very well contribute to aggression.
It's the same with medical problems. We need early detection and treatment; regular medical, dental, hearing and vision evaluations; and of course optimal medication management.
Finally, there are the physical needs. Food and drink need to be regularly available to avoid hunger and thirst. We need to monitor for things like constipation, incontinence, personal hygiene, and even whether the person is too hot or too cold. Finally, we need to adapt the environment if the person has sensory impairments, as this can easily lead them to misperceive what's happening around them.
In summary, violence or aggression between care providers and people with dementia in any setting is not inevitable. We have evidence-informed approaches at our disposal to significantly reduce the risk of these incidents occurring. We at the Alzheimer Society of Canada urge this committee to enlist the help of researchers and clinicians, experts in this field, to increase the safety of care providers and people living with dementia, and to thereby improve the quality of life and care in Canada.
Thank you very much for your consideration and your attention.