In this feature article, Dr Thoreya Swage examines the provision of dementia care in nursing homes, the difficulties that surround diagnosis and treatment, and the potential benefits of these services being provided.
In 2009 the Department of Health published Living well with Dementia: A National Dementia Strategy in response to the enormous challenge faced by the UK of people living with dementia.
The document predicted that number of people with dementia in the UK will increase from approximately 700,000 people (at the time of publication) to 1.4 million by 2040, leading to an increase in costs to over £50 billion a year.
The aim of the strategy was to improve the provision of dementia services for people in England, focusing on three main areas.
Enhancing awareness of the condition
Making an earlier diagnosis intervention
Providing a better quality of care.
Seventeen objectives were identified as part of the national strategy, one of which (objective 11) addressed the need to improve the quality of care for people with dementia who are living in care homes. This included the need to develop policies for the management of dementia in the care home, covering the appropriate use of antipsychotic medication in this care group; clear pathways of care being defined, including the commissioning of specialist in-reach community mental health teams, primary medical and dental care and pharmacy services, and enhanced inspection processes.
The strategy provided examples of actions that could be included to enhance the quality of care of people with dementia in this, setting such as:
detailed assessment by a mental health professional on admission
regular six-monthly reviews
access to specialist advice on problems between reviews through the means of regular visits
non-pharmacological strategies to manage behavioural problems in dementia, avoiding as much as possible the initiation of antipsychotic medication
specialist and rapid input where necessary into the initiation, review and cessation of antipsychotic medication for people with dementia
provision of a more therapeutic environment in the care home.
Care Quality Commission thematic review of dementia care
Currently about three-quarters of the 400,000 older people living in care homes in England have dementia or a similar condition. This figure highlights the extent of the challenge faced by staff and primary care professionals in this setting.
During 2013 and 2014 a thematic review of dementia care was undertaken by the Care Quality Commission (CQC) to assess the change in services since the publication of the National Dementia Strategy. The CQC inspectors visited 29 care homes and 20 hospitals to examine how people’s needs were assessed, how care was delivered, the quality of that care and the interaction between providers.
The CQC found that the quality of dementia care varied greatly and that people experienced poor care somewhere along the pathway. It was clear that although guidance had been available for many years, improvements in care were still required. A summary of the care home findings are shown below.
Step in the dementia pathway — findings of variation or poor care
Percentage of care homes not meeting these needs
Assessment of a person’s care needs
Planning and provision of care including meeting people’s physical, mental health, emotional and social needs
Involving people or families/carers in decisions about care and choices about how to spend their time
Understanding and knowledge of dementia care by care home staff
Monitoring the quality of dementia care
Providers sharing information when people moved between services
The table shows the gap in care for people with dementia.
What is dementia?
Dementia is a deterioration of the higher functions of the brain. It includes symptoms such a decline in cognitive functioning and in the ability to judge, think, plan and organise, plus associated changes in a person’s behaviour, for example, emotional lability (sudden changes in emotional state), irritability, apathy or coarsening of social skills. To make a diagnosis of dementia these symptoms need to be evident over a course of months and years.
The diagnosis of dementia can be made when the person affected requests this or the carers need this. There are many types of dementia including:
Vascular or multi-infarct dementia
Mixed Alzheimer’s and vascular dementia
Lewy Body Dementia (LBD)
Dementia associated with Parkinson’s disease.
Rarer forms of dementia include Korsakoff’s syndrome (associated with chronic alcohol consumption), human immunodeficiency virus (HIV) related cognitive impairment and Creutzfeldt-Jakob disease (CJD). People with Down’s syndrome have a higher risk of developing dementia as they grow older.
Taking a careful history from the affected person and their carers will point to the correct diagnosis, and there are simple cognition tests that can be used to support the diagnosis. In many instances the diagnosis can only be made through a number of interviews over time or a through a historic review of the patient’s symptoms and behaviours.
The symptoms of depression and delirium are similar to that of dementia and can occur concurrently, however, these need to be identified and the cause treated separately if they are present in someone with dementia.
Getting a diagnosis
Most diagnoses are made by specialist mental health services or memory clinics. However, care home residents are not always able to travel to these services which, more often than not, offer interventions that are appropriate for the earlier stages of the disease. In addition, many people in care homes do by-pass the usual pathways leading to formal diagnosis if their move has been planned, rather than as a result of hospital discharge or through a breakdown in home support.
It is important to note that people can live with dementia for 7-12 years following diagnosis and therefore ensuring appropriate support and treatment is essential to help such a person have a good quality of life.
The National Clinical Director for Dementia at NHS England, Alistair Burns, has proposed that GPs work closely with the care homes in their area to improve the recognition and assessment of dementia. He has highlighted the fact that it is possible for any clinician to make a diagnosis of dementia once the symptoms are established, and that a brain scan is not always necessary.
To support primary care professionals a guide called Dementia Revealed: What Primary Care Needs to Know has been published to help GPs make a correct diagnosis. In addition, another guide for primary care practitioners called Dementia diagnosis and management, has been produced to enhance the management of care home residents with this condition.
Some care homes have dedicated sessions from general practitioners (GPs) who could ensure that the residents with dementia are on the Quality and Outcomes Framework (QOF) register of the practice. Specific discussions with the care home manager may identify residents who appear to have dementia but have not had a formal diagnosis. The majority will not need referral to specialist mental health services for confirmation of the diagnosis, although people with atypical symptoms will require assessment from secondary care experts.
Managing care home residents with dementia
The National Clinical Director for Dementia has suggested that good care involves GPs and care home managers establishing a process whereby new residents to the home are reviewed and assessed for the symptoms of dementia. It would then be possible to carry out a review of medication and arrange for baseline investigations such as blood tests and so on. If there is a diagnosis of dementia then this can be noted in the care home records and also on the practice QOF register.
Specialist advice is helpful in the early stages of dementia, or where the presentation is atypical, or the person has behavioural, or psychological symptoms, or with someone who has learning disabilities. Such advice may also be necessary in circumstances where the exact cause needs to be ascertained as this may clinical implications, for example, the prescribing of drugs for Alzheimer’s disease, the treatment of vascular risk factors in vascular dementia and the avoidance of antipsychotics in LBD. In addition, continuing support post diagnosis, should be planned with the affected person involved whenever possible, plus their families and this is generally independent of the cause of the dementia.
What are the benefits to diagnosing and managing dementia in care home residents?
There is a view that there is little benefit in diagnosing people who have significant physical conditions and great care needs with dementia as this would have limited impact on their overall care. However, there are practical benefits to having a formal diagnosis such as:
some people with mild or moderate dementia may find that cholinesterase inhibitor drugs or memantine will alleviate their symptoms. There is a risk that mild to moderate dementia may be “missed” by care home staff as people who have these symptoms may be seen to be relatively cognitively intact compared to other residents who may have more severe forms of the condition and pose little challenge to their care. They often have labels like “pleasantly confused” attributed to them
having a diagnosis of dementia may set in motion a medication review of the resident leading to the stopping of drugs that can adversely affect cognition
noting a diagnosis of dementia in the care home records provides helpful information to health and social care professionals who may assess the resident.
Supporting better dementia care
Having a diagnosis of dementia can enhance the management of residents with the condition, for example:
facilitating the understanding of behaviours that can emerge
care home staff understanding the increased risk of developing a confused state in the presence of an acute illness
alerting doctors to the risk of prescribing neuroleptic (antipsychotic) medicines in people with dementia
care plans may need to be amended to take the effects of dementia into account, eg creating suitable environments, up-skilling staff and managing distress occurring as a result of disorientation
a formal diagnosis of dementia may help relatives and friends understand the changes in behaviour and appearance they observe in their loved one and provide a helpful contribution to their relative’s care
a diagnosis of dementia can facilitate a discussion about advance care planning in a care home resident, so that it is clear what actions are to be taken when an acute physical illness occurs and whether or not to admit to hospital, as well as having a better idea of other important areas of management. Hospital admissions for people with dementia can be very distressing for them and their families. In addition, these types of admissions can be highly challenging for acute hospitals particularly for the staff, and also can result in longer lengths of stay and higher readmission rates compared to patients who do not have dementia
the Alzheimer’s Society in conjunction with the Department of Health (DH), is providing an evidence -based training programme for staff in care homes to reduce the use of antipyschotic drugs in people with dementia called the Focused Intervention Training and Support (FITS) project. The aim of this training is to improve dementia diagnosis rates and enhance management in care homes
having good data on the prevalence of dementia in different settings including care homes can improve the planning of services by Clinical Commissioning Groups and local authorities. The requirement to agree Sustainability and Transformation Plans based on a geographical “footprint” can now facilitate the planning and seamless delivery of care across health and social services for people with dementia.
As a consequence of the CQC report into dementia care, GPs are encouraged to work with their local residential homes to improve the recognition and assessment of this condition not only for the benefit of residents themselves but also for the better use of services across the health and social care setting.
Last reviewed 22 March 2016