Dementia is a growing concern as it appears to be increasing worldwide. Those of us providing help and counselling will encounter more people impacted by dementia, so we need to be prepared to support them.
Dementia diagnoses are often met with fear and distress. The image we have in our minds is of someone slumped in a wheelchair or wandering about in an agitated state. We envision bland, soulless, institutional environments – long drab hallways and hospital beds. No one wants to end up like this. However, this does not have to be the story of dementia!
Here are six facts about dementia that can provide a new perspective to helpers and their clients:
It is possible to live well with dementia.
We value cognitive ability, so it can be difficult to imagine living well with impaired cognition, but well-being and quality of life are possible. Factors that promote well-being include a sense of belonging and safety – feeling valued, loved, and accepted by others. Continuing to have a sense of purpose or meaning in life is also important. This can be as simple as being able to perform a familiar task like folding clothes or dusting. Emotional and relational capacities still exist, and they are what contribute to quality of life.
Factors that promote well-being include a sense of belonging and safety – feeling valued, loved, and accepted by others.
The individual’s family can also experience satisfaction and quality of life. For the family, finding meaning, relationship satisfaction, and social support are factors in their well-being. Many even report positive experiences despite the losses and changes they encounter. As helpers, we can assist them to find a path to well-being for themselves and their loved ones.
The Music & Memory® organization is an example of how something as simple as listening to familiar music can enhance quality of life. This video shows the positive impact of music on even the most lost and withdrawn people.
Simple environmental adaptations can go a long way toward improving quality of life.
Open-concept kitchen/dining areas, low thresholds, and better lighting and colours that help with wayfinding are just a few things that can be done to reduce anxiety and confusion. In this video, Wendy Mitchell describes how she made her home dementia-friendly. Best practices for dementia-friendly care homes are also available.
On a community scale, neighbourhoods can also be made more inclusive and supportive. Features of dementia-friendly neighbourhoods include comfortable, easy-to-see outdoor seating, memory clubs, and a population educated in how to approach persons with dementia. All of these adaptations can reduce the stresses of dementia for everyone.
The relationship is key to caring for a person with dementia.
As many as 90 percent of “challenging” behaviours may be due to how others interact with the person. A falsely jolly approach can be as distressing as impatience or detachment. Even when cognitive decline is advanced, people deserve respect and can recognize when others are uncaring, frustrated, or babying them.
Good dementia care is not about having strategies and a list of their likes and dislikes or interaction techniques – it is about the quality of the relationship.
It is not enough to know about a person; instead, it is necessary to get to know them. Good dementia care is not about having strategies and a list of their likes and dislikes or interaction techniques – it is about the quality of the relationship.
The relationship benefits the carer as well. In offering empathy to a person who is understandably lost and confused, we also receive the rewards of human connection.
Behaviours such as agitation often have an identifiable cause.
Distressing behaviours are usually related to unmet needs, misperceptions, or the way others respond.
The challenge for the person experiencing dementia is to get others to understand what they need or want. For example, agitation is often related to physical discomfort such as constipation, or to anxiety caused by a confusing environment. For example, someone might refuse to get in a bathtub because their depth perception is impaired and it looks bottomless.
Caring for someone with dementia is a daily journey of discovery about what their experience and needs are in the moment. Use curiosity to identify the unmet need rather than assuming you know the cause of their behaviour.
Caring for someone with dementia is a daily journey of discovery about what their experience and needs are in the moment.
The greatest needs of families are participation, information, and support.
Families provide the bulk of dementia care in the community. Therefore, they need to be participants and partners with health care providers, not just recipients of instructions or reports. Information about what to expect, strategies for coping, and available resources is essential. Most of all, active, meaningful social support is needed. The Alzheimer’s Society is an excellent source of reliable information and support in Canada, the USA, and the UK.
The North American model of long-term care could be radically reimagined.
Here in North America, most long- term care facilities still follow an institutional model. Dementia “villages” in Europe, Japan, and the UK provide environments that are more home-like and have been proven to have a positive effect on residents’ well-being. The difference between these villages and the institutions we are used to is striking. This video tour of The Village Langley is an example of a dementia village in Canada.
Imagine how different our experiences and expectations of dementia could be if we believed quality of life was possible and did what we could to promote it. Let’s aid the individuals and clients we work with to find a path to well-being and human connectedness despite the ravages of this disease.
For more FREE RESOURCES on this topic and others, visit our free resources page.Share this: