Table 2 Changing clinical practice in dementia: elements of a training programme for primary care teams

Pattern recognition (interpreting the meaning of accumulating symptoms)

Growing personal awareness/knowledge of members of the public as well as professional experience amongst practitioners

- Personal experiences offer a lot of lessons. The professional who is also a carer/relative/friend can ‘see the other side’.- Produce a video for professionals about the life of people with dementia at home.

Understanding the difficulties of the diagnostic process

- Recognition of complexity/uncertainty.- Listening to carers and family members.

A raised profile for dementia in the GP’s work environment (increasing receptiveness)

- The professional and organisational culture of the practice is important: create a learning environment.- Include reminders and templates in electronic medical records.- Seek greater understanding of cognitive symptoms and their effects on patients.- Education should be tailored to individual practice team’s needs.

Practice team awareness of the issues

- Partners need to allow and encourage nurses and receptionists to attend training. Doctors also need to be prepared to learn from non-medical professionals.- Non-clinical staff need to be empowered to alert clinicians to changes in individuals’ behaviour (for example, repeated requests for regular medication, repeated defaults from consultations).- Involve the whole team in clinical meetings.

Practice systems for intelligence gathering, collation of information and knowledge of individual’s family circumstances and social networks, and responsibility for acting on that gathered knowledge

- ‘Key worker’ roles in bigger practices.- Having ‘at risk’ registers. - In smaller practices, all team members meet with the patient and carer at some point of time.- Named family or carer main contact important, especially for those living alone.- Establishing relationships with patient’s neighbours/milkman and so on.

Continuity of care for individuals, which deepens knowledge, allows observation over time, and permits trust to develop

- Systems for maintaining continuity of care need to be discussed explicitly, especially in large group practices.- Dementia needs active management by the practice.

Managing expectations of patients and carers by primary care team

- Promote their role in early diagnosis by explain their roles in a simple language.- Promote a message for those attending for a first consultation that they will be taken seriously and their needs listened to.- Promote understanding that presenting for this initial consultation may be a hard decision for individuals/families and that ‘we’ are there to promote the interests and care to all parties caught up in this process.

Assessing the degree of impairment

Getting all sides of the story: patient, carer, others (including own team and local Social Services in case known to them)

- Experience matters here, so exchanging experience may be a mechanism.- If known to allied health professionals, they can provide useful insights.- Role of key worker is important as it may be difficult to collate information from many people.-Visit at home and seeing patients in typical environment with typical others.

Assess the risks and challenges

- Think about the level of concern of patients/carers and others.- What is patient like when out of ‘normal’ environment, for example, on holiday, in hospital – provides insight into level of impairment.

Consider other long-term conditions and their relationship to the symptoms of dementia, and other functional abilities (hearing or visual impairments, mobility problems)

- Information and explanation crucial but, with many people, having an information cascade is useful.

Using locally preferred (standardised) assessment tools; knowing their limits

- There is guidance on the usefulness of the different tools[38]- Agreement between psychiatrists about what they use and then pass information to GPs.

Using tacit knowledge (instincts, hunches, acquired experience)

- Acknowledge that tacit knowledge is useful.

Self-awareness of changes in thinking abilities (planning, calculating), and recognition of compensatory adaptations by other people (for example, someone else takes over the bill-paying)

- Ask about the methods they are using to cope with their disabilities.

Discussing possible diagnoses

Disclosure – who, when and to whom? (This is no different from breaking bad news for any other condition)

- Attention to context when giving diagnosis: where it should be done, who is present, how will they get home/be spending the rest of the day. Involving/initiating their support network can greatly help future management. Examples:(1) A support package should be given with names and addresses of the various bodies that may be able to provide help.(2) A follow-up visit should be arranged with a support nurse in a week or two to enable questions to be asked when patients and their families have had time to think things through.- Consider patient’s confidentiality. Think about when you should regard the patient as being a dependant, as in the case of a dependent child.- A process for communications between specialists is required to take the responsibility of follow-up after disclosure.

Negotiate disclosure of the diagnosis with patient/carer

- This could be tied up with end of care and advance care planning - breaking bad news and discussing options for the future.

Responding

Maintain a positive attitude about dementia: ‘something can be done’ - based on awareness of local resources

- Wider understanding about differential diagnosis (Alzheimer’s disease/vascular dementia/Lewy body dementia) and its implications for treatment and management.- Awareness of range of possible interventions other than medical treatment. For example: training packages for improving communication and use of activities such as Sonas).- Forming closer links between GP surgeries and local dementia specialist support services.

Getting support and involvement of secondary care

- Specialist services offer assessment and diagnostic services. Having a responsive local specialist service makes a difference to GP behaviour.- May be useful if special services could provide a summary of how their cognitive symptoms translate into activities of daily living and some strategies of dealing with them.- Lack of accessibility and approachability of the resources could lead GPs to feel unsupported and frustrated. Training of psycho-geriatricians and improved communication could help.

Phase in responses involving resources/services

- Professional requires clear understanding of what is available.- Requires an assessment of that person’s needs, and those of their family or other supporters.

Locate services and assess if they make a difference

- Think in terms of advanced support systems, care packages, alarm systems, simple behavioural strategies for carers.- Map local and national services, including voluntary organisations.

Medication for dementia and ‘shared care’ systems

-T ake cultural factors of the practice and local specialist services into consideration.

Support for carers (practical, information, psychological support ) means understanding how and why family members respond differently to dementia

- Liaise with local carers’ group.For example, names and addresses of other patients at a similar stage of the illness made available (if there is consent) for perhaps a ‘buddy’ system.- Be aware that stigma applies to services as well as dementia itself. This may influence your source of advice.- Assess capacity and effect of the new Act/importance of discussing power of attorney early on while the patient still has capacity.- Record patient’s views early on in the disease process so that can use this as a guide later.