Openness versus Isolation

Some relatives need time to get over the shock of the diagnosis before they tell other people, even if they have suspected it for some time. Others choose to tell immediate family and friends first to have support in the difficult period around the diagnosis.

There are advantages and disadvantages to both. See the item with the same heading as well on the page for the person with dementia. As mentioned before, it is important that you all try to agree. 

In addition to their great loss, some relatives feel embarrassed and guilty about having dementia in the family and for that reason do not want to talk about the situation.

There is still a stigma about suffering from a disease where a person loses some of their mental abilities. At these times you need to remember that diseases such as depression, anxiety and dementia are common. And as in all other disorders where mental function is affected, nobody is to blame.

  If the diagnosis is made early, the immediate family will often be the only people that really notice that there is something different about the person with dementia. Acquaintances will also notice it gradually as the disease progresses.

Most people will notice it long before you think they do, because relatives who spend the most time with the person with dementia will get used to their declining level of functioning. That may mean that family and friends who do not know about the illness and who you do not see for long periods will wonder about your relative and may not really know how to react to seemingly obvious changes in ‘personality’. They may distance themselves from you which is unfortunate because you will need the support of family and friends during the time to come.