The challenge of living with early-onset dementia
At least 3,000 people in Belgium under the age of 65 suffer from early-onset dementia, but until now, there’s been minimal support and information about the condition. A new website aimed at patients, families and health workers is changing that
Not just the elderly
A new website launched by Flemish organisations and a Dutch partner aims to raise awareness about the condition among the public, health-care professionals and policymakers.
Early-onset dementia was first put in the spotlight in Flanders in 2007, when a working group published the first practical manual on the disorder. The group included not-for-profit organisations, hospitals, government agencies, scientists and partners of people with the disease.
“At the time, there was almost no information available on the condition, which caused a lot of frustration among people who were confronted with it,” explains Jurn Verschraegen, director of the Flemish Expertise Centre on Dementia.
Now the working group has presented an updated manual and an informative website, in conjunction with Maastricht University’s Alzheimer Centre Limburg. “We developed the website at the request of the children of people with early-onset dementia, who sometimes exchange experiences,” says Verschraegen. “The design was in the hands of the daughter of someone suffering from the disorder, who knows all too well which questions have to be answered.”
The website includes practical information, the proper channels to search for help, scientific progress and the latest news. It also features the working group’s 10-point plan, a compilation of the most important challenges for policymakers in Flanders. It was first published in 2010, as a guideline for the previous government, and was adapted after the Dutch NeedYD study (Needs in Young-onset Dementia) identified more clearly the needs of people with the condition and their families.
A thorough survey has to replace these estimates with clear figures so a policy strategy can be adopted
One of the problems included in the 10-point plan concerns the vagueness of the statistics. “The figures we have are based on one study from a research team in the UK, from several years ago,” says Verschraegen. On the basis of these results, the working group estimates that there are between 3,000 and 12,000 people with early-onset dementia in Belgium. The early-onset variant thus comprises 2 to 9% of the total cases of dementia.
It’s believed that approximately 700 Belgians each year are diagnosed with the disorder, two-thirds of whom are 55 or older. There are also cases known of children and people in their 20s with dementia, but these are extremely rare. “A thorough survey has to replace these estimates with clear figures so a policy strategy can be adopted according to the scale of the problem,” says Verschraegen.
At the top of the list of challenges, the working group has placed the need for a quicker diagnosis, which can be achieved through better education of health-care professionals.
According to Mathieu Vandenbulcke, expert on the condition at the University Hospital (UZ) Leuven, on average four-and-a-half years can pass between the first signs of the disease and the correct diagnosis. “Because it is a relatively rare disease,” he says, “it is often confused with more common psychological issues.”
Early-onset dementia is often wrongly identified by doctors as depression, burn-out, midlife crisis, obsessive-compulsive disorder, an alcohol problem or schizophrenia.
“Early-onset dementia is an umbrella term that encompasses symptoms of many brain diseases, of which the principal ones are Alzheimer’s and frontotemporal dementia,” explains Vandenbulcke. Important signs of Alzheimer’s disease include memory loss, misinterpreting spatial relationships, speaking and writing troubles, difficulty focusing and mood swings.
The frontotemporal dementia symptoms can mainly be categorised as behavioural or language issues. People may become self-centred, emotionally distant, withdrawn and unaware of others’ feelings, or they might avoid social contact or neglect hobbies and interests. Language problems include having trouble remembering names, objects, facts and words. Sometimes people also experience changes in their fluency of speech and pronunciation.
It goes without saying that these problems seriously affect someone’s personal and professional life
“It goes without saying that these problems seriously affect someone’s personal and professional life,” says Vandenbulcke. “It can also cause financial troubles, which are aggravated as people are often at the stage when they still have to pay off a mortgage and children’s educational costs.”
The progress of the disease forces most people to quit their jobs, and they often become isolated as social contacts are lost. Since this comes on top of the blow of the diagnosis, there is a danger that people can become depressed, putting further pressure on family relationships. The expertise centre therefore calls on health-care professionals to closely follow up their patients’ psychological situation after diagnosis.
To help people deal with the psychological difficulties, the Flemish Expertise Centre on Dementia is also developing an educational kit, which will be distributed in September. The organisation is also helping to set up buddy programmes that train volunteers to help people with early-onset dementia to carry out household tasks or during recreational activities, like taking a walk.
Such a programme reduces the pressure on caregivers, like family members, and helps people without a caregiver who is always present.
Breaking down taboos
“People with early-onset dementia often still have a good physical condition and cognitive capabilities, which have to be further stimulated to limit the effects of their disease,” explains Verschraegen. If they need day care or residential care, this should also be adapted to their needs. “Their situation can deteriorate more quickly if they are cared for alongside elderly people with dementia.”
The working group is calling for the establishment of more care centres that focus specifically on people with early-onset dementia. The centres should, for example, include more physical therapists who make sure the patients are active enough. Psychologists should be in charge of the behavioural therapy, while social assistants help to improve family ties.
In class, he often got confused in the middle of his lessons and repeated himself
For the moment, there are five centres dedicated to these specific disorders in Flanders, but several more projects are in the pipeline. UZ Leuven, for example, is setting up a separate crisis and diagnostic centre. Verschraegen feels there should be at least two specialised care centres in each province.
The expertise centre is also involved in setting up programmes at university colleges, which train health-care professionals to deal with the challenges of early-onset dementia. In January, the Roeselare campus of the Catholic University College Vives became the first institution to provide this programme.
The centre is also a partner in the Te Gek!? (Too Crazy) initiative, a campaign started five years ago at the Sint-Annendael psychiatric hospital in Diest, Flemish Brabant. The goal is to break down preconceptions and taboos around mental and cognitive illnesses.
Last summer, four people with early-onset dementia cycled over mountains in France to raise awareness about their disorder, an adventure that was recorded in a documentary. As a successor to this Te Gek!? campaign event, the expertise centre is planning a hiking tour in the Himalayas.
Support from friends
One of the participants of the cycling tour in France was Luc Claes from Kessel-Lo near Leuven. His wife, Marleen Ruelens, tells me that her husband was diagnosed with the Alzheimer’s variant of early-onset dementia three years ago, when he was 51. The first signs of the disease became apparent in his work as a primary school teacher.
“In class, he often got confused in the middle of his lessons and repeated himself,” she says. “At home, he needed more and more time to correct tests because he would have to start over again several times out of uncertainty.”
We have received lots of understanding from friends, and cycling is an important outle
After six months, Claes realised that something was wrong and went to a neurologist, who immediately gave him the correct diagnosis. “This was a serious shock, and a further blow came a few months later when he had to give up his job,” says Ruelens.
Losing the job also meant losing a lot of social contact. “Thankfully, we have received lots of understanding from friends, and cycling is an important outlet,” she says.
Cycling has, however, recently become more difficult as the disease is impairing Claes’ ability to interpret spatial relationships, making it harder to judge how to take a corner and carry out other manoeuvres. His orientation capacities have also deteriorated, so he can no longer go out on his own without getting lost. Sometimes his vision also falters.
Ruelens and her husband have been searching for voluntary work to keep him active, give him a sense of fulfilment and expand his social circle. But they have not yet found anything suitable.
“There should be special volunteering activities organised for people with early-onset dementia,” she says. “There are thousands of people out there like my husband, who need the activity and can still do useful work for society.”