Spending time with someone living with dementia
A common concern many have when they are informed about a loved one or a friend has been diagnosed dementia is they do not know what to say or how to be with that person.
The answer to this can change depending on the stage the person with dementia is at, but one of the most important things to do is to continue to engage with the person diagnosed and the people that care for them.
It is all too common that friends and loved ones slowly distance themselves and as a result cause unnecessary isolation of both the person diagnosed and their carer. This also contributes to the grief they may already be experiencing due to the diagnosis. It is extremely distressing when your “trusted” friends and relatives abandon you.
Often, we hear statements such as “I know nothing about dementia, I do not know how to help” or “I do not want to be in the way”. Although the type of interaction may change over time you should not change your usual interaction patterns. Albeit you may need to be flexible to accommodate a last-minute change of plans due to an unexpected temporary change in the person diagnosed. Your acceptance of this will be an enormous help and relief to the carer and the person diagnosed.
One of the essential needs of a carer is the occasional period of respite, to be able do things, have some breathing space or do nothing and have a break. To provide that respite it may need someone else to spend time with the person diagnosed. It is important to retain regular contact, the person living with dementia may not recognise you if you do not have regular interaction. This may result in them not trusting you enough to be alone with them and therefore will seek comfort by needing their primary carer to come back. Therefore, the carer will not be able to enjoy a short period of respite.
As a carer it is not uncommon to hear someone say, “I would like to remember them the way they were”. This can be devastating for a carer to hear; it can be perceived to be insensitive by the carer as they would probably wish for the same. The reality of the life of the carer is that they will be there for the good and the bad times, they would not and cannot consider a situation otherwise. The person with dementia will change, but it is still possible to have fun and engage with them, albeit it may be in a different way. Many people with dementia do not change their underlying personality and will enjoy a modification of the same things as they did on the past. Supporting and adapting will not only be rewarding it will help further cement your relationship with the carer.