Families with a person with dementia have monthly costs of 1,600 euros and 70% report extreme emotional fatigue
The vast majority of families with people with dementia have to bear a monthly cost of more than 1,600 euros and seven in ten informal caregivers face extreme emotional fatigue, concludes a study released this Wednesday.
“More than 80% of families reported a significant financial impact due to the care provided to people with dementia, with average monthly costs of 1,042 euros in direct expenses and 574 euros in indirect expenses”, indicate the conclusions of the “Living with Dementia” study.
Developed by the NOVA Center for Global Health (NCGH), the study included a sample of 305 informal caregivers, mostly members of the Alzheimer Portugal association, divided into two groups: children and spouses of people with dementia.
Portugal has almost 15 thousand recognized informal caregivers, mainly women with an average age close to 60 years old, according to data from the Social Security Institute for July.
According to the NCGH, the majority of informal caregivers with an active professional life find it very difficult to balance caring for their family members with work and, in addition, the less education they have and the older they are, “the less access to support they have due to lack of knowledge and the difficulty in dealing with bureaucracies”.
One of the main results of the study reveals that 70% of informal caregivers face extreme emotional fatigue, while 60% say they feel high physical fatigue.
“The informal caregiver of a person with dementia is a person at risk due to the levels of physical and psychological fatigue to which they are subject”, warns the study, concluding that “82% of caregivers indicated the need for rest support, but only 4% received this support.”
According to the data now released, 78% of caregivers needed or need home support, but only 20% had access, and 86% reported that rest activities became more difficult after the person with dementia was diagnosed.
“The vast majority of informal caregivers report that they are unaware of what support they are entitled to and whether they exist in their area”, the document also highlights, which states that the percentage of male informal caregivers has been increasing in line with what is happening at an international level, a change in profile that raises specific training needs.
According to the NCGH study, only half of caregivers received some type of training to deal with dementia, which reveals a “significant gap in training and support for informal caregivers”.
The hygiene of those in charge, specific nutrition for each phase of the disease and the cognitive stimulation of the patient “are among the areas in which the greatest lack of training is recognized”, also warns the study coordinated by Henrique Lopes.
“Contrary to the popular idea” that families intend to place their family member in a residential structure, the majority of respondents responded that they seek to “keep the person with dementia in their care in the family space for as long as possible”.
Despite this conclusion, “more residential structures specialized in dementia will be needed given the current number of patients and the growth in their number in the coming decades”, warns the NCGH.
Dementia consists of a set of symptoms that correspond to a continuous and generally progressive decline in higher nervous functions, which include memory loss, decreased mental agility, difficulties in expression, problems with understanding and decision-making capacity.
The most common forms of dementia are Alzheimer’s disease and vascular dementia.
The informal caregiver statute was approved in 2019, regulating the rights and duties of the caregiver and the person being cared for and establishing the respective support measures.
The diploma provides that only the main informal caregiver can request a support allowance, however, other assistance measures are foreseen, such as rest for the caregiver, the specific intervention plan, self-help groups or psychosocial support.
In January this year, parliament unanimously approved the first change to the status of informal caregivers, extending it to people with no family ties to the person being cared for, but who live in their home.
