Bradford Dementia Group A pluralist evaluation of memory services: Perspectives from people with memory problems, their families and memory service staff Clive Baldwin Murna Downs Jessica Tasker Michael Jubb Michelle Place

Bradford Dementia Group The Memory Service Pilot service emphasises clients' psychological and social needs alongside the establishment of a diagnosis Traditional service focuses on diagnosis, medication and monitoring

Bradford Dementia Group Pilot service Multidisciplinary and individualised assessment The development of a care plan which addresses the bio- psychosocial aspects of living with dementia Emphasis on early intervention, prevention and non pharmacological approaches; Early access and signposting to other services and The provision of pre- and post- diagnosis counselling; A range of individualised and group therapeutic psychosocial interventions for people with memory problems and their carers;

Bradford Dementia Group Other research Importance of psychosocial intervention particularly pre diagnostic work and being listened to (Moniz Cook et al., 2006) Memory services improve quality of life and behavioural and psychological symptoms (Banerjee et al., 2007) Memory clinics, whilst initially unnerving, make a positive difference (Cahill et al., 2008) Memory clinics can neutralise stigma of dementia by providing timely interventions for living well with the condition (Moniz-Cook and Jolley, 2009)

Bradford Dementia Group Data collection Three interviews with people with memory problems –immediately before first appointment –immediately after first appointment –several weeks after second appointment Family carers completed questionnaires at same time Phone interviews with staff

Bradford Dementia Group The experience of people with memory problems Over half did not want help for their memory Just under half did – mainly improvement in memory Some anticipated fear and stigmatisation

Bradford Dementia Group People gained in ways they did not expect Advice for living well with memory problems: –Information about a support group –Financial and benefits advice –Knowledge that memory service is there if needed –Opportunity to discuss situation with a professional Time and attention of staff Increased motivation Knowing someone cares

Bradford Dementia Group Finding out that memory problems do not merit concern

Bradford Dementia Group People did not gain in the ways they wanted Only two experienced an improvement in memory via anti dementia drugs

Bradford Dementia Group Remaining concerns Include: –Lack of stimulating activities –Loneliness –Depression –Nerves and anxiety –Memory training Little difference in experience of the two services

Bradford Dementia Group Family carers Lack of information about the memory service –Few carers had been given enough information –Those who had were more likely to be attending the pilot Support needs not well met by either service Those attending the pilot received more advice on managing the situation and more information about memory changes

Bradford Dementia Group Care plans Few carers reported these had been created for themselves or their relatives. Those that did were more likely to attend the traditional service

Bradford Dementia Group Staff views: Pilot service Staff views Strengths for person with memory problems More time to spend with them An understanding and knowledgeable person to speak to Knowing the service is there and can be accessed at any time Service users Shared view with staff

Bradford Dementia Group Strengths for person continued Shorter time between referral and first appointment Nature of assessment means –People are encouraged to look at problems openly –There is a mechanism for assessing needs –Staff are able to balance needs of person and carer Early intervention not dependant on diagnosis Not mentioned as important Does not matter to service user provided theperson making the assessment is knowledgeable and nice Not mentioned as important

Bradford Dementia Group Strengths for carer Staff views Opportunity to be listened to Seeing a ‘medic’ makes it real Carers’ groups, drop ins and rehabs Needs assessment Alzheimer’s society presence at MDT’s Receive written information Carers Shared with staff Not shared Not discussed Better at traditional service Not commented upon Lacked information

Bradford Dementia Group Key findings Comparison of services: –For people, little difference between services –For carers, pilot offered more advice on managing the situation and information about the memory problems –Neither service discussed many support services with carers

Bradford Dementia Group Key findings (cont’d) Some aspects of pilot service not working – for example, meeting carers’ needs Carers’ thought traditional service better at addressing their needs, pilot service for their relative Disjunction between staff views of benefits and preferences of service users

Bradford Dementia Group

People with memory problems 18 participants: –10 men; 8 women –mean age 77 –5 live alone; 13 live with spouse –5 attending traditional service –13 attending the pilot service

Bradford Dementia Group Family carers 17 participants –1 man; 16 women –10 spouses; 7 adult children –mean age 61 –5 attending the traditional service –12 attending the pilot service

Bradford Dementia Group Staffs views 13 professionals –3 in the traditional service –10 in the pilot service