Living with dementia in your family

When a relative starts developing first signs of dementia, family members are often faced with a dilemma: Should you dare to openly talk about dementia or is it better not to address it and avoid risking to scare the affected person and make them feel uncomfortable?

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According to the 2015 Alzheimer’s statistics, there are almost 44 million people worldwide suffering from Alzheimer’s or a similar form of dementia [1]. However, only one in four people have been diagnosed accordingly [1]. Developing symptoms of dementia is a slow process: the cognitive functions decline slowly but steadily and at first, this process is not very noticeable. Family and friends are usually the first ones to realize that something is wrong and their loved one is changing. However, the affected person is often too ashamed to talk about it so how are friends and family supposed to act? Is it better to talk about what is going on or should you leave it up to the affected person to decide when the time is right to address it? Not only friends and family are helpless when faced with the question of how to act around a person with dementia. Even family doctors often don’t know how to talk to a patient who is starting to develop symptoms of dementia and whom they may have known for many years. This is a difficult situation for anyone involved as the person they knew before is slowly changing and they don’t know how to behave toward these changing circumstances. Should they keep quiet? Or should they confront the affected person and bring the issue to light so it can be discussed frankly and treated in the right way?

Study reveals: Remaining silent is very common

Your brain dissolves

What is more common for people to do in this situation: remain silent or address the issue? To take a deeper look at this question, the German Center for Neurodegenerative Diseases (GCND) has conducted an examination of 7,000 patients over the age of 70 in 131 family practices [2]. First, the patients were given a simple test by the scientists in order to get an overview of their mental capacities. A low test score indicated that the person was suffering from dementia. Furthermore, the scientists compared the test scores with the patient’s medical records. This way, the scientists could see whether a person with dementia had been diagnosed as such [2].

The difference between test scores and medical records

Of the 7,000 examined patients, 1,200 scored in the lower part of the test, which indicated that they were suffering from dementia. However, comparing these 1,200 test scores with the corresponding person’s medical records, the scientists found that only 40% of these patients had been diagnosed with dementia prior to taking the test [2]. This means that in reality, the actual number of people suffering from dementia is more than twice as high as the official numbers suggest.

Honesty is the best policy

Where did your memory go?The GCND scientists point out that people who have been diagnosed with dementia are generally hospitalized less and for a shorter amount of time than people with dementia who have not been diagnosed yet. This is important as hospital stays can speed up the progression of dementia. Therefore, talking openly and honestly about dementia, making sure a person is diagnosed appropriately and is getting the right treatment is the best way to assist and support a loved one suffering from dementia.

Relationships benefit from honesty

Being honest about the condition is beneficial to all family members. Hiding it or avoiding the subject will only harm family relationships in the long term. Loved ones will thank the affected person for being honest with them. As long as there is uncertainty, they may not know how to interpret seemingly incomprehensible behaviour and it might confuse or scare them. “Did he forget my birthday?”, thinks the concerned wife, “am I not that important to him?” or "where do these sudden outbursts of anger come from?" A family member can deal with these things much better once they know what causes them. In addition, once everything is brought to light, the affected person will lose their inhibition and shame to talk about their condition.  

Honesty is the best support

The key to your memoryWhat remains to be said is that it takes a lot of courage to tell family members about a condition that is dreadful to most of us. However, remaining silent about dementia increases the confusion on both sides. Being honest is the best way for family members and the affected person to stand by each other’s side and deal with the situation in the best possible way.

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