Mental healthcare utilisation and costs before and after dementia diagnosis: evidence from electronic health records

Objectives

To describe secondary mental healthcare utilisation and associated costs among patients diagnosed with dementia or mild cognitive impairment (MCI).

Design

Retrospective cohort study using routinely collected electronic health record data.

Setting

Secondary mental healthcare services within a large NHS mental health provider in South London, UK.

Participants

Adults aged 18 years or older with a recorded diagnosis of dementia or MCI between 1 January 2010 and 31 December 2020. Patients surviving less than one year after diagnosis were excluded. The final cohort comprised 16,081 individuals.

Primary and secondary outcome measures

Service utilisation and NHS mental health service costs during the 12 months before and after diagnosis, including inpatient, outpatient and memory clinic contacts.

Results

The proportion of patients with at least one recorded mental health service contact declined from 91% in the 12 months before diagnosis to 69% after diagnosis. Among service users, mean NHS mental health costs increased from £1,497 to £2,177 per person following diagnosis (mean increase £680; p<0.001), driven primarily by inpatient care. Dementia diagnosis, younger age, male gender, living alone, greater cognitive impairment and higher clinical symptom burden were independently associated with higher costs. Ethnic differences in service use and costs were also observed.

Conclusions

Although overall service engagement declined following diagnosis, costs increased among those continuing to access care, indicating greater intensity of service use. Understanding patterns of secondary mental healthcare utilisation and associated costs may help inform planning and resource allocation within dementia services.

Strengths and limitations of this study

• This study used a large retrospective cohort of 16,081 adults with mild cognitive impairment or dementia identified from routinely collected electronic health records within a major UK mental health provider.

• The Clinical Record Interactive Search (CRIS) platform enabled analysis of service utilisation and costs across inpatient, outpatient, and memory clinic services before and after diagnosis.

• The study examined healthcare utilisation within the same individuals during the 12 months before and after diagnosis, allowing comparison of changes over time.

• The analysis was restricted to secondary mental healthcare contacts recorded within South London and Maudsley NHS Foundation Trust and did not capture primary care, acute hospital care, social care, medication costs, or informal care.

• Routinely collected electronic health record data may contain missing or incomplete information, particularly for variables such as living situation and care home residence.