Study: Dementia healthcare services need to be redesigned

Families have a significant role to play in helping persons with dementia. [The home of Fixers/Flickr]

This article is part of our special report Is Europe ready for Alzheimer’s?.

People with dementia remain under-diagnosed and lack comprehensive and continuing healthcare, a report has found, urging policymakers to focus on primary care services. reports from Copenhagen.

A new report from Alzheimer’s Disease International, authored by researchers at King’s College London and the London School of Economics and Political Science (LSE), found that the vast majority of persons with dementia have yet to receive a diagnosis and calls for a global transformation in healthcare.

It also claims that strategies need to be developed that will focus on prevention and risk assessment, while rebalancing non-specialist primary care.

Rising dementia numbers in EU causes alarm

The European Union is stepping up efforts to combat dementia, but is being urged to do more, as 18.7 million EU citizens are expected to suffer from the illness by 2050.

Diagnosis and cost

The report, Improving healthcare for people living with dementia, rings the alarm about the rapid rise in dementia cases worldwide, which are projected to triple by 2050. A particular aspect of concern is the low levels of dementia diagnosis that prevent dementia patients from having access to care and treatment.

The researchers noted that around half of persons with dementia (40-50%) in high-income countries, and one in ten or less (5-10%) in low and middle-income countries have received a diagnosis.

In high-income countries, the costs of healthcare are higher for those suffering from dementia than age-matched controls, with a substantial proportion of costs arising from hospitalisation.

Gilles Pargneaux, a French Socialist MEP, recently told EURACTIV that dementia costs Europe €123 billion per year, in terms of medical expenditures and social care.

According to the report, a radical change in the way healthcare is delivered to individuals living with dementia should be made, focusing more on non-specialist primary care.

“Greater involvement of non-specialist primary care staff can unlock capacity to meet increasing demand for dementia care, and could make the cost of care per person up to 40% cheaper,” the report reads.

Primary care staff are non-specialist doctors and nurses based in the community who are typically the first point of contact with the healthcare system.

Primary care

Martin Prince, the lead author of the report at King’s College London, told EURACTIV that current specialist models of dementia care (where geriatricians, neurologists, and psychiatrists are providing dementia care) were unlikely to be able to scale up to care for the growing number of individuals affected by dementia – especially in low and middle-income countries.

“There is evidence that when primary care doctors take responsibility for dementia care they can achieve similar outcomes to specialists. Nurses can be case managers, and perform diagnostic assessments and reviews,” he said.

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Alzheimer’s disease and other forms of dementia remain underdiagnosed in most European countries, Jean Georges told EURACTIV.

Prince  explained that training was crucial if primary care doctors are to take on an increased role in treating dementia patients. This, he said, can be achieved by defining a ‘pathway’ for dementia care with clearly defined roles for primary care doctors, specialists and others to work collaboratively.

“Specialists will need to take on a prominent role in training and supervising non-specialists in more general tasks,” Prince said. “In low-resource countries, a greater commitment is needed to strengthen primary healthcare. These are elements that should be contained in a National Plan on Dementia, with allocated funding, in every country,” he added, emphasising that more effort is needed to integrate dementia in primary healthcare.

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Professor Craig Ritchie, who is the director of the University of Edinburgh Centre for Dementia Prevention, told EURACTIV that primary or non-specialist care has two main roles: one linked to diagnosis and another related to prevention.

“There are still a lot of people in the world who have not been diagnosed with dementia who are living with this condition; I think there is a particular role for primary care to play in making this diagnosis,” he said.

“For instance, we need to see who does best during the whole evolution of the disease. Early disease possibly requires more specialist assessment in making a diagnosis but later in the disease primary care certainly will have a very prominent if not leading role,” he noted.

Regarding prevention, he emphasised that although efforts have rightly focused on developing new drugs, there are probably a lot of things to do in risk mitigation, like the promotion of a better diet, exercise, and healthier lifestyle.

“Clearly, there is a role for the general practitioners in this as there is in other chronic conditions like diabetes or heart disease. So the general practitioners not only have a role in making diagnoses but also a very critical role in terms of prevention and maintenance of brain health.”

What can the family do?

For Ritchie, families and close relatives have a critical role to play. Living with someone affected by dementia has a major impact on the wellbeing of family members who may need to sacrifice their professional lives to care for the patient, on top of the challenges of seeing a loved one’s illness progress.

The family could also help identify the early symptoms, Ritchie said. “So family members have to be encouraged and given the opportunity to seek assistance if they are worried about a loved one’s memory,” he pointed out, saying the first point of contact is often the general practitioner.

Family members should also be involved in the therapy process, which helps optimise treatment, Ritchie said. But families cannot bear the entire burden, he warned. “Good care must also reflect and manage the needs of family members who may have developed their own physical and mental health needs in their caring role,” he remarked.

Raising awareness in the EU

The latest survey regarding the state of dementia care in the EU showed that half the carers spent at least 10 hours a day looking after their loved one and only 17% of them consider that the level of care for the elderly in their country is good.

They also noted that the information they received at diagnosis was “inadequate”, and called for more information on drug treatments.

Four out of five said they wanted more information on help and support services and just two out of five were informed about the existence of an Alzheimer’s association.

“Perhaps of greatest concern is that more than half have no access to services such as home care, day care or residential/nursing home care, and when these services are available, many carers have to pay themselves,” the report reads.

Another report, Mapping dementia-friendly communities across Europe, commissioned by the European Foundations’ Initiative on Dementia (EFID) and carried out in 2014-2015 by the Mental Health Foundation (a UK non-governmental organisation), specified the need for dementia-friendly communities across Europe.

The report aimed at providing practical information to support good practice around sustainable, inclusive and supportive environments for persons living with dementia and their carers.

Among the findings, researchers suggested that dementia sufferers should be actively included and involved in the communities they live in. Raising awareness about dementia was also highlighted by the researchers, who warned that “unclear information can be misleading and inadvertently risk adding to stigma”.

EU data on the prevalence on Alzheimer's disease and other dementias are collected by Alzheimer Europe, a non-governmental organisation aimed at raising awareness of all forms of dementia.

An estimated 7.3 million Europeans (EU-27) suffered from different types of dementias in 2006. Within this group, more women (4.9 million) than men (2.4 million) were affected.

Although dementia does not only affect older people, the likelihood of developing dementia nevertheless increases with age.

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