In the world of dementia, the term carer is very broad. It includes wives and husbands, partners, sons and daughters, in-laws, nieces and nephews, friends and neighbours.
Some people who fit this broad definition prefer not to think of themselves as a carer, and a person living with dementia won’t always want to think of themselves as having a carer.
But for the purpose of this guide, the term carer will be used to refer to people who provide unpaid support to the person with dementia.
The caring role can be both positive and negative for the carer. It can bring people together, and bring and sense of joy and fulfilment. It can also lead to strain, stress and depression (7).
Research has shown that carers often want:
- to be recognised as partners in care – to be included, to be listened to, and to have their expertise and personal knowledge of the person living with dementia taken into account
- information – about the nature and progression of dementia, the likely impacts on the person they care for, the impact on them and other carers, and strategies to assist and manage changes (see ‘Adjusting to the diagnosis and changing cognition’, p13)
- emotional and psychological support – in their role as carer, particularly with the feelings of loss, grief and loss of personal identity
- help with navigating the system
- time for themselves, respite, a break.
The National Dementia Helpline is an Australian Government funded initiative.