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The “Terrible Maze” of Services for People Living with Dementia – new journal article accepted for publication

Posted in Dementia Project News, and Publications

It is well known that dementia is a challenging, progressive set of conditions which present a large care burden to informal, family carers. A complex tapestry of health and social care services are needed to support people living with dementia. In a new article that has just been accepted for publication in Dementia: The International Journal of Social Research and Practice Elizabeth Peel and Rosie Harding focus on family carers’ talk about health and social care services. Three themes in our questionnaire, focus group and interview data with 190 carers are explored. Firstly, that services are a ‘maze’. Secondly, that services are overly limited – ‘beyond our remit’; and third the battle and fighting discourse participants used. A key finding is that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake. Our findings demonstrate that the reasons for carers of people with dementia having reportedly poor take up of services are more complex than previous research suggests. Rather than refusing services, carers of people with dementia, who are often under a great deal of perceived strain, find accessing support services challenging and stressful.

The full reference to the article is as follows: Peel, E. & Harding, R. (in press) “It’s a huge maze, the system, it’s a terrible maze”: Dementia carers’ constructions of navigating health and social care services. Dementia: The International Journal of Social Research and Practice.

The article won’t appear in print for a while, but in the meantime you can ask for a copy of the pre-publication version by emailing




  1. Beverley Rudd
    Beverley Rudd

    I am a final year Social Work student trying to get hold of an electronic copy of the research which I believe was published in Dementia journal that you and Rosie Harding wrote. Its called The Terrible Maze of services for people living with Dementia.

    Can you advise how I can get hold of a copy of this as I am unable to find it through my universitys portal site?



    March 22, 2013
    • Hi Beverley,

      The article is not yet published. I will email you the pre-print version.

      Best wishes

      May 21, 2013

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