People with dementia and comorbidities are receiving disjointed substandard care, warn MPs

Health and Social care services habitually treat conditions in isolation resulting in significant human and financial implications.

The All Party Parliamentary Group (APPG) on Dementia is calling on Government and health and social care watchdogs to urgently join up care for people with dementia and comorbidities. As they state, managing multiple long-term conditions is this century’s number one challenge for the health and social care system.

70% of people with dementia are living with at least one other long-term health condition, yet the vast majority consistently receive disjointed and substandard care. The inquiry highlighted that our health and social care system is habitually treating illnesses and conditions in isolation. The financial implications of this are staggering – research by the International Longevity Centre-UK estimates that the cost of mismanaging dementia and diabetes, depression, and urinary tract infections is almost £1 billion per year*.

To address this, the APPG is calling for multiple reviews for separate conditions to be consolidated into one holistic, annual health review, to be coordinated by a GP. Revising the Quality Outcomes Framework (which currently incentivises separate reviews) will help to deliver this in practice. The Group has advised that this may have a profound effect on the support people receive to effectively self-manage their conditions, and enable GPs to spot any health issues earlier.

People with dementia are less likely to receive a diagnosis for other health conditions, and get the care and support they need to manage them. Untreated comorbidities, such as diabetes, can cause dementia to progress on average one to two years faster. As their care and support needs grow, people with dementia are more likely to be called for multiple reviews, miss appointments, and be admitted to hospital in an emergency.

With an ageing population resulting in a higher incidence of dementia and multi-morbidity and an unprecedented strain placed on the health and social care system, the APPG has focused its first inquiry of the new parliament on this growing issue. The Group sought evidence on the barriers and solutions to supporting people with dementia and long term conditions. It received evidence from over 30 written submissions and two oral sessions. Additionally, Alzheimer’s Society held two focus groups to directly gather the experiences of people with dementia and their carers.

The report revealed that problems exist on every level, from fragmented front-line care to public health messaging, and system-wide regulation.

  • When a person develops a long-term health condition, they are placed on a GP’s register for that specific condition, meaning that people with multiple conditions appear on many registers that often require similar health checks, such as weight or blood pressure
  • Clinicians lack guidance on how to safely prescribe medicine for people with dementia and comorbidities, and links between community pharmacists and GPs are weak in many areas
  • The Care Quality Commission (CQC) inspects individual providers rather than care pathways
  • The general public still has a poor understanding of the mid-life management of risk factors for dementia and related comorbidities. In spite of this, dementia still lacks the precedence of other conditions in the NHS Health Check

Further recommendations from the APPG inquiry include:

  • The Royal Pharmaceutical Society should develop new guidelines on polypharmacy that address how to treat people living with dementia and other long-term conditions
  • CQC inspection regimes should assess the quality of care pathways across health and social care settings alongside the performance of individual providers
  • Public Health England should include data on common comorbidities and dementia on the Dementia Intelligence Network, to better inform commissioning of integrated care pathways
  • Public Health England should extend the mandatory dementia component of the NHS Health Checks to people aged 40-65, to help them to take steps to reduce their risk of dementia

Baroness Sally Greengross, Chair of the All Party Parliamentary Group on Dementia, said:

'This inquiry has brought into sharp focus the sheer scale of the difficulties people with dementia and other long-term conditions face when trying to access joined-up care. Despite welcome policy initiatives aiming to deliver integrated care and support, the system habitually treats isolated conditions, rather than the person as a whole.

'The health and social care system is at crisis point and, unfortunately, there is no silver bullet to treat it. The last Government made a considerable effort to give people with dementia the attention they deserve, with increased public awareness, improvements in diagnosis rates and post-diagnosis support. Now, these recommendations from the APPG on dementia are an opportunity for the Government to continue what it started.'

George McNamara, Head of Policy at Alzheimer’s Society, said:

'People with dementia tell us they often have to retell their story to over 20 different organisations, specialists and practitioners in order to get the care and support and they need. The system is persistently failing these people by not providing them with someone who has the proper oversight of their health and wellbeing to coordinate their care.

'The APPG report paints a stark picture of the human misery and economic cost of mismanaging dementia and comorbidities. Dementia is uniquely challenging for the health and social care system. The condition is progressive and people’s needs are complex – if we can get care and support right for them, we can improve the system for people living with the other conditions too.'