How to recognise and handle dementia

It is often a gradual process. Those affected feel lethargic and irritable. They tire easily and sleep poorly. They find it increasingly difficult to remember things or navigate new surroundings. They get moody and gradually start to withdraw. All these can be initial symptoms of dementia.

153,000 people in Switzerland suffer from Alzheimer’s or another form of dementia, with a further 33,000 cases being diagnosed each year. This means that every third family is affected directly or indirectly. As age is one of the key risk factors for dementia and our population is steadily getting older, experts believe that this figure is sure to rise in the future.

Dementia is the umbrella term for over 100 different illnesses that have a negative impact on the functioning of the brain. Dementia predominantly affects cognitive areas such as thinking, memory, orientation and language.

The key distinction is whether it is primary or secondary dementia. Primary dementia is triggered by the breakdown of nerve cells in the brain, where the nerve cells die without any apparent cause. The most common types of primary dementia include: Alzheimer’s, which is responsible for about 60% of dementia cases, vascular dementia, Lewy body dementia and frontotemporal dementia.

Secondary dementia is much rarer. Only around 10% of all dementia cases are triggered by an underlying disease. In these cases, brain cells die as a result of an organic illness such as an infection, a brain injury, a brain tumour or a cardiovascular disease.

Certain factors that make dementia more likely cannot be changed, such as age, gender or certain inherited genetic changes. However, there are ways to prevent and reduce the risk of developing dementia. These include a healthy diet, plenty of exercise and memory training. So, activities such as reading every day, doing puzzles, playing music, dancing or learning something new can help keep your brain fit and thus prevent dementia.

But you should stay away from cigarettes, drugs and toxins such as alcohol, as these can all promote dementia.

Dementia is much more than occasional forgetfulness. If someone frequently forgets important appointments or no longer remembers significant events such as birthdays or family celebrations, this can be a sign of a memory disorder associated with dementia. It’s often the short-term memory that’s affected at the beginning, before the disease then also starts to impact the long-term memory.

Another common symptom is struggling to find words in the middle of a conversation. It’s not uncommon for those affected to use words from a similar context or even invent new words. In addition, they get confused about space and time. People suddenly feeling lost in familiar surroundings or no longer being able to correctly reproduce their own dates of birth.

It’s particularly concerning when someone no longer recognises acquaintances or confuses them with others. It can also affect the use of everyday objects, such as when someone tries to brush their hair with a wooden spoon. Those affected can also lose the ability to remember familiar routines or activities, and can feel insecure and overwhelmed as a result. 

Often, it isn’t the person affected who notices the changes, but their family. In this case, it’s a good idea to talk to close friends and other family members to see if they’ve noticed any unusual behaviour, too. The Alzheimer Schweiz organisation recommends talking to the person affected about your concerns, and going with them to their family doctor to be able to describe your worries and any observations you have had about them.

The diagnosis of dementia often starts with the family doctor, who checks the medical history of the person affected and conducts both physical and neurological examinations. Short dementia screening tests such as the mini-mental state exam or the clock drawing test are usually helpful in obtaining an initial view of the person’s cognitive state. In the case of unclear diagnoses or more complex cases, the patient is referred to a memory clinic.

After diagnosis, medical support is crucial. Specialists monitor the progression of the disease, and can also recommend and initiate measures to support those affected. It’s important to involve relatives in the diagnosis and treatment process in order to ensure they receive the best possible support and advice. 

The treatment of dementia, especially Alzheimer’s disease, includes both non-medicative and medicative approaches. The focus is on providing holistic care in order to maintain the patient’s well-being and independence for as long as possible.

Non-medicative therapies such as occupational therapy, speech therapy, art and music therapy are central to holistic care. Occupational therapy aims to facilitate daily activities, thereby improving quality of life. Speech therapy provides support in particular for speech and swallowing disorders. Special approaches such as art therapy use creative processes to promote communication and self-awareness, while music therapy addresses feelings and fears through sound and rhythm.

While there’s no cure for dementia, medication such as anti-dementia drugs can slow its development and improve quality of life. Cholinesterase inhibitors or memantine, which promote the transmission of information in the brain, are often used to treat Alzheimer’s disease. Ginkgo extract, a herbal substance, also improves blood flow to the brain and can relieve symptoms such as forgetfulness and dizziness.

It's important to also treat any accompanying symptoms such as depression, sleep disorders or aggressiveness. Special caution is required here, as medicative treatment often involves side effects An individual treatment plan is crucial to the success of the treatment.

“Those who notice changes in a loved one’s everyday behaviour often feel uneasy. It’s advisable to overcome your inhibitions by describing your observations in an open, non-judgemental manner and saying how you feel,” advises Agnès Henry, dementia counsellor at the nationwide Alzheimer telephone service run by the non-profit organisation Alzheimer Switzerland.

Discussing it with other people closely related to them or the family doctor can also help make sense of your own observations and develop a sense of whether they are pure coincidences or not. Irritable and accusatory exchanges should be avoided. “Those affected sense that something has changed, which is why it is even more vital that the mutual trust between you is not broken,” she explains.

A dementia diagnosis signals the start of a new phase of life, both for those affected and their loved ones. A phase of life shaped by uncertainty and constant change. It is important that the patient doesn’t feel like they are being coddled and wrapped up in cotton wool. “Dementia sufferers should be encouraged to remain as independent as possible. Of course, it is also important that a third party weighs up the risks involved,” Henry explains.

Stress should be avoided at all costs. It can be triggered much quicker in dementia sufferers than healthy people. “Clear instructions, short and concise sentences and consistent rituals help dementia suffers to get their bearings and feel safe,” adds Henry.

The challenge facing those who care for a loved one with dementia is not to neglect themselves. “Dementia takes a lot out of family members, both emotionally and physically. Which means it is even more vital to ask for help. You don’t have to cope with everything alone,” says Henry. It helps even if you can get other family members or friends to spend a few hours with the sufferer so that you have some time out for yourself.

Dementia leads to changes in personality, so relatives are often faced with a long goodbye. Groups for family members caring for those with dementia can offer valuable support on grieving and how to cope. “The more you talk about your own experiences and share details with other loved ones, the easier it will be for you to handle the situation,” says Henry.