We really appreciate what you are trying to do
The first statement on the notes written by group members after the discussion
Seven members of the DeNDRoN PPI Forum took part in a group discussion of the CAREDEM project on 19 March 2013. They were provided with a briefing document at the group discussion, which lasted 1.5 hours.
The discussion was organised within a modified nominal group format, with a specific task – the identification of lessons to be learned from CAREDEM – and with time to clarify answers and reach agreement on key topics (the modification was not prioritising answers or topics).
Steve Iliffe facilitated the discussion, took notes and attempted to sum up the topics discussed. The next day written notes from a further discussion were given to the research team and these have incorporated into this report. This report will be sent to the group members to verify and validate the topics.
The group’s response to the briefing document ranged across three main topics: the nature of the illness pathway in dementia and the implications for the timing and conduct of case management; the nature of existing services for people with dementia; and the attributes needed by case managers working with people with dementia and their carers.
1. Illness processes
Two things matter here. Comorbidities have an impact on the illness pathway and the case manager needs to understand them and their interactions with dementia. Conflict is common and the case manager has to be able to deal with it – the most difficult conflicts are those that develop between the person with dementia and their carers.
Timing of case management may be critical and it should begin around the time of diagnosis (to start the development of care plans early) whilst allowing for other and later routes of entry.
2. Services for people with dementia
The fragmentation of care is long-standing and will not easily be resolved by case management. The development time for case management may need to be longer than the 5 or 6 months allowed in the CAREDEM project – but one practice nearly reached its recruitment target (this practice would have reached its recruitment target if case management work had not taken precedence over recruitment in the one session per week allocated to case management), so perhaps the time needed will vary from one community to another. Services are very variable across the country, so localising case management will be important.
Existing services mostly do not do case management as defined in CAREDEM – this is true of most specialist mental health services, and most care homes – so their users should not be excluded from a future trial. However, clinicians need to be engaged with case management, both in the general practices and in local specialist services, both to assist the case manager and to avoid conflicts of interest, duplication of effort and misunderstandings about respective roles.
The demand for nursing skills is high, especially in general practice, so it may not be realistic to expect practice nurses to take on case management tasks.
3. Attributes of the case manager
These were summed up as authority, flexibility and being skilled in project management. The variability and high turnover of case managers were also mentioned (based in part on the personal experience of a group member from Northumberland, where there are case managers for people with dementia), and it was argued that the best case manager is a family member.
Authority was seen as necessary to make case management happen, partly through negotiation with senior managers in other services. Flexibility (and functioning in ‘catch-up mode’) is necessary for the case manager’s response to (sometimes rapidly) changing needs in the person with dementia – described by one participant as ‘a moving target’ – and their carers. Project management skills were suggested as the core components of case management, rather than clinical skills, within an ‘ambassadorial’ role that had authority.
