The Journal of Quality Research in Dementia, Issue 3

Professor Murna Downs

Head of Dementia Studies Group, Bradford Dementia Group, Division of Dementia Studies, School of Health Studies, University of Bradford, Bradford BD5 0BB Telephone 01274 233996. Fax 01274 236395. Email m.downs@bradford.ac.uk

Abstract

Effective primary care response is essential to quality of life for people with dementia and their families. Causes for inadequate response have been identified and a variety of approaches adopted to address the problems. These centre on education and training for both professionals and consumers, and efficient partnership working between key health and social care professionals.

This review describes how a study to develop educational interventions for practitioners, funded by the Alzheimer's Society, a consumer initiative by the Alzheimer's Association in California, and research into improving partnership working offer reasons for optimism.

Role of primary care in supporting people with dementia and their families

Primary care plays a key role in supporting people with dementia and their families throughout their journey living with dementia. This has been generally acknowledged for some time and has recently been enshrined in government policy and guidance [1-3]. While much emphasis has been placed on the role of primary care in early detection and diagnosis of dementia, its role in regular assessment, support and referral is no less important. In addition, the role of primary care for people with advanced dementia and those at the end of life is critical to quality of life.

Barriers to effective primary care

It is widely acknowledged that the primary care response to people with dementia and their families is an area of concern. Primary care services have been criticised for failing to provide timely detection or diagnosis, sufficient information or appropriate referral [1, 4-7]. Several barriers to effective primary care have been identified [8- 11] including:

• Ageism
• Lack of information and training for primary care professionals about the importance of diagnosis and ongoing support [1,8]
• The stigma associated with having a diagnosis of dementia [12, 13]
• Lack of information about dementia and available services and supports for people with dementia and carers
• Lack of suitable supports and services
• Strategies for improving primary care

A variety of efforts have been made to improve primary care responses to people with dementia and their families. These have included education for primary care professionals [14,9], education for consumers [15,16] and partnership between key professionals across the medical and social divide [17, 18]. While most of these have demonstrated some success, the combined effect of these approaches has yet to be determined.

Education and training for professionals

Considerable attention has been paid to the needs for training and education [1,5,19]. Curricula have been proposed and a variety of approaches adopted, including seminars and workshops, CD-ROM, academic detailing and audit. With funding from the Alzheimer's Society QRD Programme through the Alexander and Christina Dykes Project Grant, a multisite study and multidisciplinary collaborative study developed and tested three educational interventions for primary care practitioners. The educational interventions, using a standard curriculum designed by a multidisciplinary expert group, reflected different approaches to adult learning [20]:

• A CD-Rom for self-directed learning used clinical case studies encouraging professionals to reflect on knowledge. This 'electronic book' has an indexing system that allows easy access to different themes and hypertext links for easy movement from one subject to another.
• Decision support software for real-time, real-case learning. The software was written inside the existing electronic medical record software and produces prompts to assist clinical reasoning and care planning [21,22]. It has been incorporated into the Egton Medical Information Systems (EMIS) electronic medical record for its subscribers and is now available to about 5,000 medical practices in the UK.
• Practice-based workshops for peer discussion and reflection. The workshops provide an opportunity for small, multidisciplinary groups to consider real cases. The curriculum for practice-based workshops for general practitioners and the electronic tutorial is available to download from the Alzheimer's Society website (http://www.alzheimers.org.uk/).

Study outcome

Recently reported in the British Medical Journal [14], the study demonstrated that both decision support software and practice-based workshops led to increased rates of detection of dementia, as compared to control practices.

Education and training for people with dementia and their families

Consumer initiatives directed at people with dementia and their families have received less attention than interventions targeting professionals. One such approach is the Partnering with your Doctor (PWYD) programme developed by the Alzheimer's Association in California, which aims to educate people with early stage dementia and their family carers through three elements.

1. A 90-minute workshop focusing on eight strategies to guide consumers through the partnership process. These include:
   Planning for the visit
   Asking for a diagnosis
   Reporting recent or sudden changes, and other changes
   Talking to the doctor about your role in the partnership
   Naming your community resources
   Engaging in the partnership
   Restating and agreeing on a plan
   Scheduling the next visit.
2. A booklet that includes information on the diagnosis, treatment, and management of dementia and a list of community resources.
3. Resource logs to use in consultations, including a care log, a medication log, and an appointment log

Such an initiative fits well within a modernised healthcare system committed to user and carer involvement [23,24]. The NHS Expert Patients programme recognises patients and their carers as experts in their own right [3], albeit focusing mostly on those with physical health problems. With pilot funding from the Selby and York NHS R&D Committee, a multidisciplinary group from the University of Bradford, York NHS and the Alzheimer's Society Bradford branch are currently involved in examining the relevance of this US PWYD model for use within the NHS [15].

Importance of partnership working

It is important to note that consumer involvement in primary care for dementia involves the person with dementia and their carer, as well as the doctor. All three of the partners need appropriate information and communication skills in order to achieve successful partnership working [25]. Yet we know from general practitioners' self-reports that the information given to people with dementia is often different to the information given to their family carers [26,27]. Euphemistic terms, such as 'memory problems', are more likely to be used with people with dementia; while medical terms, like 'dementia' and 'Alzheimer's disease', are used with carers [26]. Furthermore, we know that people with dementia and their family carers may hold differing views and preferences [28]. Such differences in experiences, information and views will need to be addressed in order to achieve true partnership working. Although developing opportunities for user involvement for people with dementia may present particular challenges, evidence indicates that these can be constructively addressed [29,30,28].

Partnership between key professionals across the medical and social divide

A further approach to improving primary care services for people with dementia and their families is to develop partnerships that cross the health and social care divide. Most of the research on these approaches has been conducted in the USA. Fortinsky and colleagues [18] describe one such programme, whereby a service coordinator based with the Alzheimer's Association partners with a local primary care doctor. The client and their family are referred to the named service co-ordinator, who provides an individualised consultation about the psychosocial aspects of living with dementia, and describes relevant social services. Such an approach has led to increased diagnoses, increased reported selfefficacy, and increased knowledge about available services among primary care doctors. A related partnership between Managed Care and Alzheimer's Association Chapters as part of a National Chronic Care Consortium is also available (www.nccconline.org/about/alzheimers.htm). The components include early identification, initial assessment, care plans (both medical and social), and carer information and support. A robust research design leads the authors to conclude that such an approach holds promise for improving outcomes for people with dementia and their carers [17].

Conclusion

An adequate primary care response is essential to quality of life for people with dementia and their families. Barriers to an effective primary care response can be addressed using a variety of approaches. Our developing evidence base suggests we can be optimistic about the ability for primary care to fulfil its true potential for people with dementia and their families.

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