Carers were recruited to the study through organisations, including the Alzheimer’s society and the Carer’s Trust, and via on four online discussion groups. Questionnaires, focus groups and interviews were used to gather data about their experiences.
Respondents to the questionnaire were asked where they received support and information from. 82% accessed websites with 55% accessing support groups and 40% having used online support groups. Only 3% had not accessed any support or information. Questions were asked about perceived stress levels and the standards of support they received from professionals.
The researchers noted three themes:
- that services are a ‘maze’ and difficult to navigate,
- services are limited in scope and
- the language of fights and battles was used by carers when referring to these services.
The Social Elf blog draws out the link between the complexities of the ‘system’ and the lack of information about the resources and services that are available. It also highlights that currently there is no easy way to ensure consistent national access to information for carers of people with dementia.
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You can read the full Social Care Elf blog here. The reference for the paper reviewed in the blog is: Harding R and Peel E (2014) ‘It’s a huge maze, the system, it’s a terrible maze’: Dementia carers’ constructions of navigating health and social care services Dementia 13 (5) 642-661