Counting the true cost of dementia

Alzheimer’s Australia SA surveyed people living with dementia, their carers and families on the impact of dementia on their financial and personal lives, the key issues they faced and what would help them.

While the respondents discussed the financial strain associated with dementia, one of the key findings of the survey was that dementia has more impact on people’s lives than on their finances. While 35 per cent of respondents said they had trouble meeting the financial costs of dementia, 57 per cent had concerns about meeting the personal costs.

The top three personal issues highlighted were: concerns facing the carer (42 per cent); concerns about the limits of the person living with dementia (19 per cent) and the emotional toll on both the person living with dementia and their families (18 per cent).

When asked what would help them deal with the personal impact of living with dementia, 31 per cent pointed to carer support through more respite (22 per cent) or sharing experiences (9 per cent). A quarter wanted more information, either about dementia (16 per cent) or about services (9 per cent). A significant number (13 per cent) of carers wanted more time for themselves. Carers sought support “to keep people suffering with dementia out of residential care”.

The Cost of Dementia 2012 Questionnaire, which was conducted during the second half of last year, was completed by 123 respondents; 12 identifying as people living with dementia, 75 as carers and 31 as family members.

When asked about the financial costs associated with dementia, the top three issues highlighted were: household costs (18 per cent), transport (16 per cent) and income and finances (16 per cent).

Over two thirds (69 per cent) of respondents who named one thing that would help financially highlighted the need for more income support. They wanted the various pensions and the Carers Allowance increased “in recognition of the struggles of keeping a person with dementia at home for as long as possible and the absolute sacrifice”.

Accessing health and aged care 

When asked about their interactions with the health and aged care system, respondents were concerned about getting information “to know in advance what help there is”, “how to access the support when I need it” and “coping with questions that I don’t know the answer to” in a “very complex aged care system”.

They observed that “GP’s need to be more aware and informed about the disease”, according to the survey. They experienced a lack of medical support and access, waiting “months to get into an appointment at the Memory Clinic” and wondering “what treatment is available?”

They had to deal with “paperwork, questionnaires, taking over the finances” and privacy and confidentiality issues with “the doctor saying the patient with demetia needs to authorise release of information to family members”.

Releasing the survey, Alzheimer’s Australia SA said the results were a “call for greater support for people living with dementia and their families”.

Download the full report, The Cost of Dementia 2012 Questionnaire