Ms Sally Grundy, the Operations Manager for the Alzheimer’s Society will be present to talk about the work of the Society. This will include the preventative work being undertaken, some of the research that they are looking at, along with the support the Society gives to people in the early stages of dementia.
Minutes:
The Chair welcomed Ms Sally Grundy, Operations Manager, Alzheimer’s Society to the meeting and invited her to talk about the work of the society.
Ms Grundy gave an outline of the experience of someone, in a utopian world, who was living with dementia. In that utopian world, the person with dementia and their carer, would be seen promptly by trained health professionals, who had time to listen. The person living with dementia and the carer would be very well supported and there would be clear signposting to supporting groups and appropriate health professionals.
Ms Grundy then reported on an actual case, of a woman living with dementia and diabetes. She was lonely, suffering from low moods and as she had diabetes she was finding it very difficult to take her insulin. She had English as a second language; her family worked and could only offer limited support and her husband did not understand the condition. The Dementia Support worker found a dementia guide written in a community language to help the husband understand the condition and arranged for a nurse to help with her insulin injections. The Dementia support worker helped the family put together a plan of care for the woman and to help with the loneliness put her in touch with a local group of other ladies. Ms Grundy explained that the timing of when the Dementia Support worker became involved was critical; they worked around what people wanted, what they needed and when. The meeting heard that the Alzheimer’s Society ran activity groups, Dementia Cafes and peer support groups where carers could share experiences and talk openly. Generally speaking, people wanted more groups and for their groups to meet more frequently. When asked about the location of support groups, Ms Grundy explained that people generally did not want to meet too close to home; they tended to prefer to meet further away where they were less likely to be known. The society did not provide transport to those groups but they took transport links into account and tried to buddy up people if they needed a lift.
A Member questioned the reality of the journey of someone living with dementia, compared to the utopian situation as described earlier in the meeting. Ms Grundy responded that some aspects could be compared favourably with the utopian picture described; some were nearly there. For example, diagnosis in relation to dementia was improving and more communities were becoming dementia friendly.
Ms Grundy was asked about any research the Alzheimer’s Society carried out and the meeting heard that the society’s work included research into dementia with lewy bodies, links with diabetes and the quality of dementia services.
A Member asked whether there was a threshold in diagnosing dementia, to stipulate what was or was not dementia. Ms Grundy explained that some GPs used a diagnostic tool that required more than a yes/no answer and also took the carer’s views into account. This diagnostic tool was not routinely used in care homes; the Lead Commissioner (Dementia) commented that up to 80% of residents in care homes would have undiagnosed dementia and people deserved to have that diagnosis made. In one part of the country, staff in care homes were being trained to ask the similar diagnostic questions that G.P.s were asking. Ms Grundy added that one of the Alzheimer’s strategies going forward aimed to address the problem of undiagnosed dementia in care home residents. The Chair suggested that activity co-ordinators in care homes were skilled members of staff and could potentially carry out some assessments and the commission could recommend that the council worked with care homes to facilitate this.
A Member asked whether the Alzheimer’s Society recognised and catered for people who belonged to minority ethnic groups and/or the Lesbian, Gay, Bi-sexual and Transgender (LGBT) communities. Ms Grundy responded that while the society was not quite as advanced in this area as it should be, in Leicester it had made considerable improvements compared to elsewhere in the country. There were issues that needed answers such as the reason behind the relatively low diagnostic rate for people in the Black and Ethnic minority groups. For example was this because the diagnostic tool was inappropriate for people in this community?
The Chair drew the discussion to a close and thanked Ms Grundy for attending the meeting and extended an invitation for her to return to a future meeting of the Commission.
AGREED:
that the Commission recommend that Leicester City Council work with care homes to train Activity Co-ordinators, if possible, to use a diagnostic tool for dementia on residents.