Knowledge and Information

What information is important to get when your loved one has developed a type of dementia?

First and foremost, it is important to gain a general knowledge about the disease and then gain specific knowledge about the type of dementia your spouse or loved one has.

This requires knowing something about the prospects for the future. How will you handle everyday life? How will you handle the emotional pressure that the changes in your loved one will cause?

You can find information elsewhere about specific measures, activities for the person with dementia, aids and places to go for support. The following will deal with knowledge and information on a personal level. What kinds of questions do relatives normally ask?

How do I relate to my spouse, close family or loved one?

• It is important to be the person you have always been.
• The changing roles in the relationship means that things are not as they were; in some situations, you will have to make the decisions. Make them together with the person with dementia as much as possible.
• Don’t make demands that the person with dementia can’t meet. A person can become easily confused during a dementia disease. However, they do not want to be pushed aside and overlooked.
• Respect is important - you have to treat each other with respect. This can be hard, because the person with dementia may not always remember this or they may not have the capacity to behave in a respectful manner.  Try to remind yourself that their apparent lack of respect or consideration for you is not about you, their illness is rendering them incapable of behaving in a manner that you are accustomed to. This may mean you need to pay extra attention to your own responses to them and remind yourself to maintain your own respectful attitudes and behaviour in spite of their behaviour.

How do I inform other immediate family members? And what do I expect of them?

• It may be very difficult to announce that your spouse or relative has developed a type of dementia. Thus, some choose to keep it within the family or within the marriage.
• This secrecy can lead you to become more and more isolated because it becomes more difficult to keep up the facade.
• You may be trying to protect your family but in the long term, it is difficult to sustain.
• Support is needed from the immediate family in particular, such as children.
• As a spouse you can get into a situation where your children deny that a father or mother is suffering from dementia.
• It is very serious when that type of division occurs in the family, and professional help and guidance may be required.
• Remember, forgiveness is important. Don’t harbour grudges against each other, you will all need to pull together to deal with this effectively.

What happens when I am no longer able to handle being a carer?

• If you have made prior arrangements with your loved one about what will happen when your help is no longer enough, that will make it considerably easier for you to start the process of finding a residential care facility.
• If you cannot talk with your spouse/mother/father about this difficult matter, then maybe there is someone in the family who can step in and help, or   perhaps you could get professional help.
• When your husband or wife has moved to residential care, it is a new situation. You need to express your expectations to the people who are going to take over the primary carer role.
• You can look at the new residence as your second home, or you can choose to be a visitor. Those are two very different roles, and it is good for the care staff to know where you stand.
• You are the one who has to choose what you want and what you are able to contribute to your loved one in the new phase of life that is beginning.
• Involve yourself in and take responsibility for the person with dementia so you are still an important person to them.
• Remember: It is also completely understandable if you are tired and do not have the energy to provide as much nurturing as before. You are allowed to live your own life.
• The staff must respect your choices with respect to the level of involvement you would like to have.
• Remember that this is an opportunity to spend more quality time with your loved one without having to take on the responsibilities of a carer.
• Make some clear arrangements for the care of your loved one.
• Remember, you are in it together as carers, as the spouse you are a very important part of the care process.