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Dossier: Family

Dementia: a guide for families

A dementia diagnosis has far-reaching consequences for both sufferers and their family members. It is crucial that they take their own needs seriously.

Text: Nicole Krättli; photo: iStock

It often seems like a series of curious coincidences. Suddenly your partner asks you three times in one day when their hair appointment is, constantly misplaces their keys, forgets words and loses their way in a familiar place. Sudden anxiety, mistrust and fits of anger are also classic warning signs of onset dementia. In Switzerland, over 145,000 people suffer from Alzheimer’s or another form of dementia with around 30,000 new cases per year. It can be an extremely challenging time for both those affected and their relatives.

Agnès Henry, dementia expert for the national Alzheimer’s telephone hotline for the charitable organisation Alzheimer Schweiz, therefore recommends open and transparent communication: “It can be extremely unsettling if someone you love starts displaying these symptoms. It is a good idea to break the taboo by describing your observations openly and without judgement and saying how you feel about it.”

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. 

Rule out other illnesses

If you show understanding and empathy towards your loved one, it might be easier to bring up the subject of going to see the doctor. ​ The doctor will take their medical history and perform an extensive physical examination and take samples of blood and urine for testing. Depending on the situation, they may also order additional examinations such as an ECG and perform a quick cognitive assessment in order to gain a first insight into the patient’s cognitive state. The most well-known of these tests are the mini-mental status test and watch test.

Such an examination is not only to ascertain whether the person has dementia or not. Loss of memory and behavioural disorders can also be triggered by an array of other diseases. So it is extremely important to be able to rule these out early on.

Living with dementia

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 assesses 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 long goodbye

Those caring for a loved one with dementia are in danger of forgetting to look after 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 face everything alone,” says Henry. It helps even if you can get a family member or friend to spend a few hours with the sufferer so that you have a little time to 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 talk to others affected, the easier it will be for you to process the situation”, says Henry.

Psychological support can also help. It doesn’t matter which path relatives choose, as long as they remember to take care of themselves. “You will only be in a position to offer long-term support to the patient and be able to offer them all the support they need and have the tolerance and patience that such a difficult situation demands if you look after yourself and take time off to rest and recover”, says the expert. ​