According to Alzheimer's Disease International (ADI, From Plan to Action III), a new case of dementia is diagnosed somewhere in the world every 3 seconds. By 2050, the number of people with dementia worldwide is expected to exceed 152 million. More specifically, in Greece, according to the HELIAD (2020) study, dementia affects approximately 160,000 people. However, if we include at least two to three caregivers for each patient, the number jumps to approximately 1 million citizens of the country with the cost of dementia in Greece amounting to 3 billion euros per year!
It is a common phenomenon that all efforts are focused on the person suffering from dementia and that their caregiver is "forgotten". However, the work of caring is long, arduous and needs training and special support. The emotional and physical strain, the "burden" of the caregiver, and the often lonely road they must walk are an undeniable reality. The aim of this particular article is to provide some basic instructions to inform and help the caregiver in his difficult task.
The First Step To Understanding a Person with Dementia
When we hear the word dementia, we usually think of a person who has difficulty with memory. But dementia is not only that! It affects all mental functions as well as a person's behavior and personality. The caregiver should take into account that the person in front of them has comprehension difficulties that lead to rigid behaviors and should be able to respond to these difficulties. For this reason, after the diagnosis, it is necessary for the carer to seek the advice of a neurologist specialized in dementia, who will inform him about structures and services aimed at carers. Fortunately, they now also exist in Greece. Information and guidance will enable the caregiver to provide better quality care.
I Take Care of Myself So I Can Take Care of Others
It is, perhaps, the most important advice to be given to the new caregiver. Unfortunately, after the diagnosis, it is very common that all the attention and care is given to the person who is suffering. The upheavals in the schedule and in the lives of caregivers, which will not only last but become more and more as the disease progresses, go unnoticed. One of the biggest challenges for caregivers of people with dementia is finding the balance between the responsibilities of caring for their loved ones and self-care. The result of the lack of self-care is the burnout of the caregiver due to the accumulation of fatigue, both physical and psychological, as well as the poor quality of care of the patient. It makes perfect sense that a person who does not take care of himself would not have the reserves to be able to take care of their person. It should therefore be made clear from the outset that dementia is a chronic and progressive condition, that care will be long-term and increasingly imperative as the disease progresses, so that the carer understands that it is imperative to seek help and to be able to have some hours of rest from care.
You Are Not Alone
The issue of self-care is not the only challenge faced by caregivers of people with dementia. Loneliness in the difficult work of caring is another major challenge that caregivers face. Little by little, friends and relatives thin out their visits and caregivers close in on themselves and the difficult everyday life they experience. In recent years, however, significant strides have been made in networking caregivers to address this isolation. There are now support groups, online forums, or even local services where a caregiver can find the understanding and empathy they need. Connecting with other caregivers can be a source of comfort as well as valuable advice as new and more experienced caregivers come into contact. Thus, caregivers not only break the cycle of loneliness but can also talk about issues that they may not be able to share with people who do not know the demands of daily caring for a dementia patient.
We All Do Our Best
Another important issue that often comes up in conversations with caregivers is regrets and the moments they feel are few and far between in caring for their loved ones. The care has no instructions for use. It also doesn't have only good or only bad moments. A carer has the right to break down, shout and have "bad" days since living with a person with dementia has its difficulties and surprises. The caregiver should focus on the good times spent with the person they care for and "listen" to themselves. When they see that he/she has overstepped their bounds, the caregiver owes it to both themself and the person they care for to take a break, regain composure and control, and get back to the hard work of caring. No one is born with the skills to be a caregiver, and no one can understand the struggle of daily caregiving unless they experience it. "Bad" moments are part of caring but they are not the only ones.
In Conclusion
Caring for a person with dementia is a journey full of obstacles, emotions and moments of deep connection but also frustration. By seeking support, prioritizing self-care, and understanding the complexity of dementia as well as the difficulty of caregiving, the caregiver can continue in their demanding role. Every day is a new opportunity for them to show love, patience and strength in the face of adversity. Healthcare professionals working in the field of dementia are there to help and support them every step of the way in caring for their loved ones. They just have to ask for it!
Nikoletta Geronikola
Clinical Psychologist - Neuropsychologist
Msc, PhDc
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