6.1 Loss and grief in relation to dementia, an introduction

Empathy and compassion

When you, as a health and care professional, meet a dying person, it can awaken many thoughts and feelings. One must also meet the grief and concern of the relatives. The palliative attitude of the staff is characterized by a holistic view by supporting the individual to live with dignity and the greatest possible well-being towards the end of life.

Time and ability to reflect on one own emotions are an important part of the work. As staff, you must be able to be close but at the same time you need to have a personal distance to what happens to cope with the work.
The palliative approach also includes giving support to the family. The care should be given in collaboration with the relatives and one should, as far as possible, take into account their wishes. It is important to communicate, provide information so that the related person get the opportunity to feel involved.

Many countries have a national care program for palliative care. Municipalities and county councils may also have their own care programs for this.

Four cornerstones and imprtant philosophy of (dementia) care are:

Relieve symptoms,
team collaboration,
communication and
support for close relatives.

Dementia a palliative diagnose

Dementia is a chronical disease and a palliative diagnose. It means that a person with dementia cannot be fully recovered or treated from the disease. It is a disease that slowly destroys the brain functions and will lead to death. However, there are different diagnoses of dementia and vascular demenia can stay at the same stage for long time. There is no cure for dementia but there is medical treatment to relieve symptoms with the goal to make the life for the affected person as normal as possible.

According to several researchers the relatives to a person with dementia is grieving the loss of the person they knew. It could be hard to accept that the dementia changes the person. Grief caused by dementia has quite recently been accepted, before this grief was seen as a state of mind that comes after someone died. And the relative’s experience of stress, depression and heavy work was not related to grieving the person with dementia.