UK’s health system not designed to provide integrated care for people with dementia and other conditions

The UK’s current health and social care system isn’t fit for purpose when it comes to caring for people living with dementia (PLWD) who also have other illnesses and chronic conditions.

That’s according to a new research study by the University of Hertfordshire published in BMJ Open. It also found that the systems currently in place are not designed to sufficiently involve family carers in the way they should be.

One fifth of people living with dementia often have other medical conditions (comorbidities) such as diabetes, stroke and visual impairment. On average, PLWD have approximately five chronic illnesses in addition to their dementia.

But researchers at the University of Hertfordshire have found that services are not currently designed to provide adequate integrated care for people with dementia plus other conditions, which could be having adverse effects on their overall health.

Dr Frances Bunn, a Reader in Evidence Based Health Care at the University’s Centre for Research in Primary and Community Care, and lead author of the study, explains:

As the population ages, and the proportion of people with dementia and comorbidity increases, the delivery of healthcare becomes increasingly complex and challenging.

Navigating the different systems of care is particularly difficult for people with dementia and comorbidity, not least because they receive advice and support from different sectors of health and social care and increasingly third sector providers.

The study, which explores the impact of dementia on access to non-dementia services in the health system, recommends that more needs to be done to make sure that patients with dementia and comorbidity are receiving the proper care across the health service.

The prevalence of comorbidities in people living with dementia is significant but, prior to this study, little research had been done into the effects it can have on health organisations, their services and the patient experience.

Dr Bunn added:

While there are policy and practice initiatives to improve healthcare for patients who have dementia, there is little evidence of how comorbidity is experienced by them and how this impacts on primary and secondary healthcare services. However, there are some immediate and simple changes that can be made to improve care for this vulnerable group.

These are:

• Ensuring the impact of a diagnosis of dementia on pre-existing conditions is incorporated into care planning.
• Sharing vital information with family carers is the default option while the PLWD still has the capacity to decide.
• Giving longer appointments to PLWD so that all their conditions can be properly checked.
• Dementia-specific advice is included in guidelines for conditions such as diabetes and stroke.

The study, which involved interviewing people with dementia, family carers, and health professionals, shows that family play a significant role in coordinating their relative’s care. For example, this can involve managing appointments, organising transport and keeping records of test results. However, whilst health professionals value the role family carers play, the study found there was little formal recognition of the carers’ contribution, and no way of negotiating how or when a carers’ views could be incorporated into care planning.

However, there are many challenges family carers face that also need to be taken into account. They sometimes have difficulty in understanding how health systems work or know who to contact. Many can also have their own health problems and may face practical challenges such as travel or combining caring responsibilities with jobs. That is why a more collaborative and joined up approach is needed between all parties involved.

Dr Bunn said:

There is a need for coproduction of care in which health professionals, people living with dementia and family carers all work in partnership. The matching of management to the needs of the individual and improved collaboration across specialities and organisations is essential.

Our study further highlights not only how family carers are often responsible for negotiating continuity and access for family members with dementia but also how care systems often hinder rather than support their efforts.