Care plans for people with Alzheimer's disease.

In the linked cluster randomised trial (doi:10.1136/bmj.c2466), Nourhashemi and colleagues tested a specific care plan for patients with Alzheimer’s disease to determine whether it improved activities of daily living and delayed admission to institutional care or death.1 The authors randomised specialty memory clinics in France to provide patients with the usual care given at the clinic or a special dementia care plan, which consisted of twice yearly assessments based around a checklist and clinician initiated interventions as needed. The checklist assessed each patient’s and caregiver’s knowledge of the illness; the caregiver’s health; the need for home help and respite care; the patient’s nutritional status, functional dependency, gait, need for exercise training, behavioural symptoms, depression status, sleeping pattern, and car driving risk; any legal issues; and the decision to admit to institutional care. The interventions consisted mainly of low intensity verbal or written education and counselling for the caregiver and patient and conveying recommendations to the patient’s primary care practitioner. The trial found no significant difference in outcomes at two years.

Guideline based interventions for dementia care are recommended by many professional organisations, although it is often not clear who should carry out these interventions.2 Care plan models or guidelines often have the stated aims of delaying disease progression and functional decline, improving quality of life, controlling symptoms, and providing comfort.3 4 In Nourhashemi and colleagues’ study specialists used checklists for assessment and went through educational procedures with patients and caregivers. Yet, with the possible exception of the nutritional counselling, this may not have been very different from what specialists do as a matter of course. Patients probably received a similar level of care to that recommended by many guidelines issued by professional organisations, in particular those from European dementia specialists.5 The authors suggest that both the care plan group and the usual care group received better care and had better outcomes because they were treated in memory clinics rather than general practices. However, without a comparison group from general practice we don’t really know whether the specialty clinics provided more specialised and effective care.

Few, if any, randomised trials have looked at care plans per se (as compared with drug treatments, specific non-drug interventions, or caregiver interventions) that aim to improve outcomes for patients with dementia.2 Some fairly specific interventions directed at caregivers seem to improve behaviour but not other outcomes. For example, in one collaborative care model, nurse practitioners using ongoing standardised interventions, with caregivers focusing on environmental and behavioural management, reduced behavioural problems over one year but did not improve function or cognition.6 In another trial, individualised psychosocial interventions reduced agitation but had no effect on quality of life.7 Structured interventions provided by social workers aimed at caregivers delayed admission to institutional care compared with usual care at a New York Alzheimer’s disease research centre.8 An intensive care management programme provided by social workers that included in-home assessments increased adherence to treatment guidelines, services, and the quality of life of patients and caregivers.9 These approaches focused more on patients’ potentially disruptive behaviours and required additional clinician resources that most doctors, including those at specialty clinics, may not be able to access. Moreover, care plans and interventions that seemed most effective needed a higher intensity of intervention and greater resources.2 10

The trial was limited in having only three main outcomes—daily activities, admission to institutional care, and death—and by being unable to assess exactly what was done in the treatment as usual control clinics. Another limitation was that interventions were more frequent at baseline, when doctors first applied the checklist and did a thorough evaluation, but then became less frequent over time. This is somewhat counterintuitive because patients would be expected to receive more interventions as they inevitably progress, especially in view of their increased behavioural disturbances. This phenomenon may also indicate that the care plan—straightforward as it is—was not simple to implement. Nevertheless, the trial provides an important basis from which to assess the feasibility and effectiveness of care plans delivered by doctors. It also highlights the need to develop effective comprehensive care plans that can be integrated into practice.

The lack of a significant effect of the care plan in Nourhashemi and colleagues’ trial should not deter clinicians from providing care that is consistent with this care plan and with evidence based guidelines.4 5 The study highlights that specialists need to build a contract with patients and their families to provide the best quality of care; review care more often; and collaborate with other care providers including primary care practitioners, social workers, and nurse specialists.