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Barriers to dementia care

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Recognising the symptoms of dementia Recognising the symptoms of dementia can break down the barriers to diagnosis

People are living longer. In 2011, there were approximately 8.5 million people over the age of 65 living in the UK.1 Fast forward three years and there are now 11 million people aged 65 or over in the UK.2 A third of the total UK population (22.7 million) is aged 50 or over. By 2030, the number of people aged 60 or over is expected to pass the 20 million mark.2
An increasingly ageing population presents challenges to primary care nurses in managing the conditions and health needs that come with old age. One such condition that is regularly associated with, but not limited to, the elderly is dementia.
The G8 summit on dementia was held in London in December 2013. This kickstarted the government's focus on better diagnosis and increased funding for research to find a cure by 2025. The summit was attended by healthcare representatives from each of the G8 countries, the WHO and other charities and organisations dedicated to eradicating dementia.
After the summit, the World Dementia Council was formed, headed by world dementia envoy Dr Dennis Gillings, to lead collaborative research into curing the disease by 2025.
Government initiatives have since been launched to raise public awareness and incentivise healthcare professionals to be more aware of dementia. This includes the successful Dementia Friends scheme and awarding GPs with a £55 incentive for every dementia diagnosis. This was met with widespread criticism from GPs and healthcare professionals.
The Prime Minister's Dementia Challenge, a programme of work focused on improving health and care, dementia research and dementia-friendly communities, comes to an end in April. It will be up to the elected government in May to maintain the focus on dementia. Has all of this awareness had any affect on those with dementia?

Barriers to diagnosis
A report published at the end of 2014 by the Alzheimer's Society and Marie Curie Cancer Care found that there are still barriers in primary care that prevent diagnosis and adequate subsequent care planning. Living and Dying with Dementia in England: Barriers to Care, identified barriers to better care in three main areas: identification and planning of services, inequality of access and the quality of care experienced by people with dementia.1
The report states that a formal diagnosis from a doctor or other health professional is generally required for people to access further services.
The two key issues identified to blocking dementia diagnosis are: reluctance or fear on the part of the people with dementia to identify or acknowledge symptoms, and the ability of health and social care professionals to accurately identify and diagnose dementia, particularly in its earliest stages.
Practice nurses are considered important to diagnosing more cases of dementia because of regular interaction with patients.
'People with dementia quite commonly have other long-term conditions such as diabetes or cardiac disease, managed by practice nurses. Because of this it is vitally important for nurses to have an understanding of dementia in order to identify it,' says Gavin Terry, policy manager at the Alzheimer's Society.
He adds that that while carrying out checks practice nurses can remain aware that there is potential that someone with a long-term condition could well be presenting with signs of dementia such as memory loss, confusion, speech difficulties, mood and behavioural changes, and problems with self-care and other aspects of daily living.1
'Not being able to identify the signs of dementia are one of the main reasons it takes a long time to diagnose it. The practice nurse might not immediately think of dementia,' he says.
Tracey Lee, a specialist dementia nurse (Admiral nurse) at Shropshire Community Health NHS Trust, says that often the barrier can come from the patient themselves. 'If a person has no insight into the illness or is in denial then that can pose a problem for carers. Once they get to see a GP or practice nurse, there may then be difficulties referring on to services.'
'Diagnosis rates are quite low nationally which is a big problem and there's a big drive to get practice staff to refer people on for diagnosis,' she adds.


Age discrimination
Symptoms of dementia are often dismissed as merely characteristics of old age, and so are often not picked up by GPs, practice nurses or patients themselves. In the UK there are approximately 17,000 people with early-onset dementia aged between 45 and 651 and Mr Terry believes that there are many more who remain undiagnosed.
'We do hear stories of people in their late 40s or early 50s developing dementia. The problem is that it is difficult to get clear statistics on this because they may have had the condition for a few years before diagnosis.'
'Because it is associated with older age, which we know is not always the correct view, it may be missed in practice or take a long time to receive a diagnosis, or the GP or practice nurse may not consider dementia an option because of [a person's] age,' says Mr Terry.
'However, many of the dementia services are aimed at older people, and this does need to change,' he says. 'There needs to be a recognition that there is a whole group of people [under 65] who have a range of specific needs that are not being catered to.'
Ms Lee says that care plans for the under and over 65s are likely to be similar. 'The biggest difference would be supporting those under 65 with dementia on how they would manage at work,' says Ms Lee.
The service she works for in Shropshire works with people with dementia at any age. 'I wouldn't say that there has been any increase [in people under 65 with dementia], but we are aware that they are a group of people with a specific need and they have different needs to the older age group, in terms of maintaining work or relationships or keeping them positive.'


Quality of care
A further barrier to diagnosis is that some practice staff may not feel that they are properly supported to make the diagnosis. 'Even though things have improved in recent years, if a GP or a practice nurse didn't feel that they had the services locally to support people with dementia then they wouldn't feel willing or able to make the diagnosis, as they had no one to refer the patient on to,' says Mr Terry.
This relates to the lack of quality care identified in the report. 'It is vitally important that we get dementia advisors in place so that people have effective timely diagnosis and guaranteed support when they're diagnosed.
'There needs to be something in place for those in the middle ground, after diagnosis and before you get into the degenerative declining element of the condition,' he adds.
Ms Lee says that it is important that all of the teams involved in dementia care, such as practice staff, speech and language therapists, carers and palliative nurses need to be aware of an individual's care plan and the individual manifestations of the condition.
'[Admiral nurses] are a group of specialist nurses based in primary care. We have a good understanding of the network and each time we identify a specific need, we refer the patient on to the appropriate services. Say someone is socially isolated we would link them to services where they can attend lunch clubs or access a sports facility or something like that,' she says.
Admiral nurses operate in all areas of the country and primary care nurses can work with them directly to ensure that patients are referred to the services most relevant for them.


Action
Phil McCarvil, head of policy and public affairs at Marie Curie Cancer Care, says that the Alzheimer's Society and Marie Curie Cancer Care report will be a springboard to collating recommendations from key policy makers and experts in dementia. 'The easiest thing would be to set actions for each individual group of healthcare workers such as GPs, community nurses, care homes and so on. But by taking this kind of approach you very easily miss key parts of the picture, and this can undo some of the good work that's already been done.
'So we will bring together all of the key players including representatives from general practice, dementia carers, those responsible for planning at a national level and get them all around the table and actually plot what we need to do to address the barriers that are there and avoid creating further gaps in services. We hope to have this roundtable in March.'
Mr Terry agrees. 'All too often reports are published and they just highlight the issues but don't take any meaningful action. We will work to ensure that doesn't happen.'


References
1. Alzheimer's Society and Marie Curie Cancer Care. Living and dying with dementia in England: barriers to care. Dec 2014. https://www.mariecurie.org.uk.
2. Age UK. Later in life in the United Kingdom. http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf?dtrk=true Accessed Jan 2014.
3. Global Burden of Diseases, Injuries, and Risk Factors Study 2013. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61682-2/fulltext. The Lancet. Dec 2014.

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