12. Grief and Loss

As we know, dementia is a progressive disease and currently, there is no cure for dementia. At times you may feel worried, anxious, resentful and overwhelmed. (It is helpful to remember that the person with dementia may experience these feelings too)  It is common for carers and their families to have feelings of Loss and Grief. 

Adjusting to the changes that dementia brings is a process. It can affect us in many different ways – emotionally, mentally, physically, and spiritually. Sometimes we can feel that we are managing well and at other times we can be surprised that we feel we are not coping. These feelings can include anger, guilt, frustration and resentment. This process of adjustment is similar to that of grieving – except that the person is still with you. Such feelings are a normal part of the process of grieving. But it is important to realise that you may be under a great deal of stress and to seek emotional support for yourself.

It is important to remember that Grief is a natural reaction to a Loss. It is as much a part of your emotions as joy and sadness etc. Grief and grieving is not an illness, it isn’t a task that one must complete. Grief is a process;  it is a complex process and it will take time to adapt. 

There are a number of different dimensions to grief specifically associated with dementia and dementia care.

  • In later stage dementia Carers may find that they are grieving the loss of the person that was. More on next page
  • As dementia progresses, living with dementia may become more isolating. At a practical level, getting in and out of the car may be difficult; the person with dementia may need assistance with eating, making going out for a coffee or meal difficult.  Demands on the carer's time may become 24 hours and may seem relentless. All this may add to isolation from social support (Neimeyer and Jordan (2002).
  • Carers themselves may feel compromised about their ability if they have their own health issues. If the caregiver’s illness becomes more acute, feelings of physical and mental challenges such as depression, isolation, anger and frustration may be common.