Book: Coping and Self-Care

Living with someone who has dementia, grief may be associated with an anticipation of future losses.

Carers (and the person living with dementia) sometimes go through feelings of grief when they think about how dementia might develop and imagine the changes and losses it may cause. Families may have had plans for the future, spoken and unspoken, which will not happen. There will be a loss of independence, a possible reduction of financial earnings, a loss in relationships, a loss of intimacy. These changes may affect the person's physical and mental abilities, relationships and future plans. This is called Anticipatory Grief.

In dementia, the qualities of the person with whom one had a relationship may no longer be present. The person is present physically but they may be emotionally or psychologically absent. This is called Ambiguous Grief.

For Carers, this may lead to a range of feelings and emotions:

Feeling guilty - carers may believe that they misdiagnosed earlier behaviour or had they acted earlier they might have been able to mitigate (make less severe), delay or prevent the behaviour. 

Feelings of Loss- feeling of Loss may not be recognised or validated by others.

Feelings of Anger - at relatives, the feeling that they are unsympathetic, unsupportive, unhelpful and unrealistic, anger at God.

Feelings of Abandonment - by family / friends / God.

Feelings of Resentment - toward the person with dementia.

Fearful of the future – not sure what the future will bring.

As mentioned, feelings of grief can be difficult for yourself and others to recognise and acknowledge. Yet they are a normal response for some people where a family is supporting a person with dementia. Remember: there is no ‘right’ or ‘wrong’ way to feel.

Talk to your GP if you are feeling very low or anxious or if you are very tired and unable to sleep or eat. It is important to try to prevent your normal feelings of sadness slipping in to depression, which is much harder to deal with.