bradford dementia group a pluralist evaluation of memory services: perspectives from people with...

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


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


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;


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)


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


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


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


• Finding out that memory problems do not merit concern


People did not gain in the ways they wanted

• Only two experienced an improvement in memory via anti dementia drugs


Remaining concerns

• Include:– Lack of stimulating activities– Loneliness– Depression– Nerves and anxiety– Memory training

• Little difference in experience of the two services


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


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 GroupStaff 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 GroupStrengths 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 GroupStrengths 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


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


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


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


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


Staffs views

• 13 professionals– 3 in the traditional service– 10 in the pilot service

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