Review of dementia services for people living independently and family carers

Following a review of dementia services for people living in care homes and extra care schemes, in 2014, Healthwatch Lambeth carried out a follow up investigation in summer/autumn 2015 to gather views on services for people living with dementia independently in their own homes. The objective was to understand their and the carer’s support needs, their experience of using health and care services and any barriers faced in accessing them, to what degree these services worked in an integrated way, and their view on how they can be improved.

The HW team conducted 21 interviews with family carers and people living with dementia, face to face and on the phone focusing on how well services work for people after they have received a diagnosis of dementia.

Out of the 12 families that had experience with SLaM (South London and Maudsley) memory service, six gave positive feedback of the service, whereas the others were more ambivalent.

HWL reports that people’s experiences of health and care services after receiving a dementia diagnosis was mixed, but considerable frustration with service liaison –both within and between different teams, as well as delays with equipment and essential supplies, was detected. It was established that the interviewees’ experiences of social workers were largely negative.

Out of the 12 people interviewed who had experience of domiciliary care, only three said they were happy with the service.

Out of the 11 who commented on their GP, the majority (9) reported a good service because they felt the GP had got to know the person with dementia well.

Three carers talked about their poor or mixed experience with district nurses.

Carers reported a range of difficulties in obtaining appropriate equipment for their relatives while the ‘Older Persons Units’ at King’s College Hospital and Guy’s Hospital received positive feedback from them.

Overall, it seemed that the frustrations expressed by most of the carers spoken to often seemed to hinge on delays and difficulties in making contact with key agencies, combined with a lack of dementia awareness amongst the professions -from district nurse teams to domiciliary carers. The flexibility required for successful person-centred approaches also appeared to be absent from many of the support arrangements proffered to the carers spoken to. The outcomes also include having an enabling and supportive environment, along with a sense of belonging within the community. Given that human contact for people with dementia in the form of respite cover was identified as the biggest need by the interviewees, befriending schemes and other face to face contact would seem to be a particularly valuable investment for supporting the wellbeing of both carers and their relatives.

HWL made 6 recommendations that would help resolve the current issues and improve the services for the carers, their families and people living with Dementia.