Updated: Apr 7
Dementia is a disease that is common all over the world, especially in the elderly category. Here in Aruba we can certainly see that there are many people affected by this disease and the expectation is that the figures will only rise in the coming years with people dealing with dementia. There are many types of dementia. But what I want to focus on right now is not the person that is affected by dementia, but the burdens that family bears in taking care of their loved ones who is affected by this disease. Dementia is difficult to understand and to deal with. But once you understand it and can cope with it, it will be much easier to take care of your loved ones who is affected by this.
It is very important for you as a care giver to know that you are not alone in this and that there are many people all over the world dealing with the same issues you are dealing with on a daily basis. It is very important that you take good care of yourself before you can take care of a loved one, especially when dealing with a disease so complicated and difficult to understand.
I found some very interesting literature about this topic that I would like to share with you. On sept 10th 2018 S. Pihet and S. Kipfer published an article about a research/study that they did on: “coping with dementia caregiving.”
Here are a few interesting facts/conclusions that they found during their research.
Dementia is one of the main cause for disability and dependency in older people, with 46.8 million people affected worldwide in 2015. Due to population ageing, in the absence of a cure, we expect 75 million of persons living with dementia in 2030, and 132 million in 2050. Dementia is associated with a progressive decline in cognitive functions leading the affected person to depend more and more on the assistance, supervision and care of others. In Switzerland, more than half of the persons with dementia live at home (the other half in nursing homes), 43% requiring occasional support, 47% daily support, and 10% continuous support. Informal caregivers of the person with dementia, often their spouse or adult child, provide most of this support. These figures are similar to those of other European countries. However taking an caregiver role is becoming more and more difficult as family size reduces, geographic distance between family members, employment rates of women, and professional pressures increase . The sustainability of the care giving contribution is a core public health issue.
Despite the rewarding aspects of caregiving, such as maintaining continuity and closeness with the affected person (e.g. ), informal caregiving often imposes high demands and costs, particularly for those involved in dementia care. Many care givers experience long periods of chronic stress and heavy burden, reduced quality of life and social isolation, as well as more physical and mental health challenges, compared to their non-caregiving counterparts and to caregivers of persons without dementia.
Another research by Christine M. Snyder (and other researchers) shows the effect on caregivers when have to care for someone with dementia.
The article was published on august 5th 2014: “Dementia caregivers’ coping strategies and their relationship to health and well-being: The Cache County Study”.
Here are a few interesting statements/conclusions I found interesting to share of this article: Although the prevalence of dementia is increasing, the majority of care continues to be provided by informal caregivers such as spouses and adult children (Cantor, 1983).
Caregivers often report higher rates of depression, anxiety, and emotional burden relative to non-caregiving controls (e.g. Schulz, Boerner, Shear, Zhang, & Gitlin, 2006).
The stress of caregiving is linked to physical health outcomes; caregivers report poorer global health relative to non-caregivers (Haley, Levine, Brown, Berry, & Hughes, 1987), and caregivers report nearly twice as many chronic conditions as non-caregivers (45% versus 24%, Ho, Collins, Davis, & Doty, 2005).
I was shocked reading the statements/conclusions in these articles. Therefore I want to share with you a number of tips regarding communicating with someone who has dementia. When you can communicate well with someone who has dementia, it becomes a lot easier to take care of them. So here goes:
Converse at eye level Rather than standing up straight and looking down to someone who may be seated, bend down to be at the same level as they are. This might make you less comfortable physically, but it will facilitate a more comfortable and respectful conversation.
Never argue or disagree, instead join their reality You need to Know that the conversations you will have is not the same as talking to your best friend or spouse. Don’t treat your loved one like a child but avoid bringing up complicated topics or asking difficult questions. Above all, listen. Don’t feel the need to fill the space with your words. Let there be pauses and breaks in the conversations where your loved one can collect their thoughts. When they make a mistake in the facts, don’t feel the need to correct them every time. Instead, go with an open mind and an open heart and meet them wherever they may be.
Keep it simple, stick to short and specific statements Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronounsor abbreviations.
Reminisce in general, older memories are easier to recall than recent ones Talking about the past is the best way to strike up a conversation with someone experiencing memory loss. While people with dementia may struggle to remember recent events, they often remember the past much more vividly.
If an upset occurs, acknowledge their feelings and redirect with a change of scenery or new topic People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.
Maintain your sense of humor Use humor whenever possible, though not at the person's expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.
Hope this was a little helpful.
Thank you for stopping by!