Survival after diagnosis of dementia in primary care

Dementia syndromes are common, increasing in prevalence, and the largest cause of disability in industrialised societies, particularly disability that affects self care and the ability to carry out domestic tasks. Dementia is a progressive neurodegenerative disease that significantly reduces survival, but less is known about its prognosis than that of other life threatening illnesses.1 2 Delayed recognition of dementia is common in primary care, and the underlying reasons for this are poorly understood.

A better understanding of the effects of dementia on life expectancy is important because it enables patients and carers to plan for the future and gain access to support services earlier.3 Patients and carers want to understand the illness and be given an early diagnosis so they can make informed decisions. Access to support services can promote independence, delay admission to an institution, and prevent the “crises” of care that can occur when formal support is lacking. In addition, identifying patients with early dementia in primary care is crucial to delivering current and future treatments.4

In the linked cohort study (doi:10.1136/bmj.c3584), Rait and colleagues use the health improvement network primary care database to assess the incidence of recorded dementia in primary care from 1997 to 2007, and they compare survival from the point of recorded diagnosis with that in people without dementia in the period 1990-2007.5

The median survival of people with dementia diagnosed at age 60-69 was 6.7 years (interquartile range 3.1-10.8), falling to 1.9 years (0.7-3.6) for those diagnosed at aged 90 and over. Adjusted mortality rates were highest in the first year after diagnosis (relative risk 3.68, 95% confidence interval 3.45 to 3.92). This dropped to 2.49 (2.29 to 2.71) in the second year. The authors concluded that median survival in the primary care population is much lower than in screened populations. The high risk of death in the first year after diagnosis may reflect diagnoses made at times of crisis or late in the disease trajectory. Late recording of diagnoses of dementia in primary care means that opportunities for early intervention have been missed.

Rait and colleagues’ study might reflect the difficulties associated with making a diagnosis of dementia in primary care.6 Several factors in primary care may contribute to a delayed diagnosis of dementia, including the way people present, historical perceptions of a lack of available treatments, and difficulties in conveying a diagnosis of dementia. In addition, a lack of training and skills in this area for all healthcare professionals working in primary care, difficulty in recognising the cognitive changes of normal ageing, and resource constraints can affect the time taken to make a diagnosis.7

The number of older adults with Alzheimer’s disease and related disorders is expected to rise over the next 50 years. Although important therapeutic advances are on the horizon, they will not alter the disease course of dementia for several years yet. Some experts suggest that training and support from, in the first instance, local specialist mental health teams is the best way to engage more general practitioners in the assessment process that leads to early diagnosis of dementia.8 Others suggest that training in early recognition should not be confined to general practitioners but could usefully include practice nurses.9 The role of education and training was reiterated further by objectives one and two of the National Dementia Strategy in the United Kingdom.3

Other suggestions have included the introduction of brief screening modalities, such as the GPCOG (the general practice assessment of cognition) and the AMT (abbreviated mental test), enhanced training, and institution of national guidelines to aid earlier identification and management of dementia in primary care.10 The National Dementia Strategy seeks to enhance general practitioners’ diagnostic and management skills in dementia. Its three main aims are to raise awareness, facilitate assessment, and improve services.3 However, these aims have been questioned because of concern that encouraging reliance on referral to secondary care centres, and overstated claims of the ability of interventions to achieve clinical improvement and cost savings, may cause disappointment and frustration in primary care and in patients and their carers.11

Most older adults with dementia will be managed in primary care. The diagnosis and treatment of people throughout the course of dementia should be delivered in collaboration with the patient’s family, who have additional knowledge and understanding of the patient’s situation. The challenges for primary care include lack of time; poor access to expertise in dementia care and community resources; poor communication across medical, social, and community providers of care; the absence of an interdisciplinary dementia care team; and the difficulties of providing palliative care. This may require diversion of resources from secondary care to community and primary care.

Although most older adults with dementia will receive their medical care in the primary care setting, the diagnosis and treatment of people throughout the course of dementia will be better informed and delivered by a collaborative model that reflects the knowledge and commitment of families and primary care and substantial redirection of resources.12

Key areas to focus on in the early detection of dementia therefore include developing enhanced education and training in primary care; developing more integrated, collaborative systems of care at the primary-secondary care interface and the interface with other relevant services; and ensuring that policy makers and commissioners plan services that reflect the effects of dementia on primary care and other services.