Dementia and comorbidity – UK ‘should be shocked’ by substandard care
Labour MP and co-Chair of the APPG on Dementia, Debbie Abrahams MP, calls for 'profound changes' to the way our health system treats those with multiple conditions.
Ernie Malt has dementia. He also has type II diabetes, which requires him to inject insulin morning and evening. As his dementia progresses and his memory becomes less reliable, Ernie says he often struggles to recall whether or not he’s injected himself. He lives alone so often there isn’t anyone around to check with. His smart phone has become his memory in reserve, with alarms and reminders set to stop him from forgetting, or overdosing, on his medicine.
I know from personal experience of caring for my mother who had dementia and hypertension, the most common additional long-term condition for people with dementia, the effects of dealing with multiple conditions on her, her carers and family.
Ernie and my mother aren’t alone. 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. This is because health and social care services habitually treat conditions in isolation, resulting in significant human and financial implications.
This year the APPG on Dementia, of which I am co-Chair, investigated the problems faced by people living with dementia and one or more health conditions. The picture we uncovered was one where people with the condition frequently fall through the gaps in the system.
We heard how people 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. This is a near impossible task for someone who is frail, elderly and has dementia without considerable help.
We should be shocked by the evidence the APPG heard – including that from the Faculty of Public Health which revealed that people living with dementia are less likely to receive equivalent levels of care for their co-morbidity than those without dementia.
Experiences of unnecessary emergency hospital admissions and carers in crisis when support has not come soon enough were well-documented.
This is a problem that improved public awareness or a better diagnosis will not solve. We need to see profound changes to the way we view the patient as well as the overall system.
As a way 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. Currently, 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. This obviously leads to unnecessary, not to mention costly, duplication which is unhelpful for both the patient and clinician.
It is our belief that this change in approach could have a profound effect on the support people receive to effectively self-manage their conditions, and enable GPs to spot any health issues earlier.
Clinicians also 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. This is problematic because when medicines interact negatively, it can exacerbate someone’s dementia or other health conditions. In response to the evidence we heard, we are calling on The Royal Pharmaceutical Society to develop new guidelines on polypharmacy that address how to treat people living with dementia and other long-term conditions.
Finally, we need to see more targeted awareness raising of the risk factors for dementia and other long-term conditions such as diabetes and heart disease through a revamping on the NHS health check. This should include a dementia risk assessment component to enable people at risk to take action before it’s too late .
With an ageing population, managing long-term conditions is the number one challenge for health and social care services this century. Urgent action is needed if we are to see this group of people better supported and ensure an NHS that can not only survive, but is equipped to meet this challenge head-on and support people to live fulfilled lives.
Debbie Abrahams is the Labour MP for Oldham East and Saddleworth and Co-Chair of the APPG on Dementia