Ten top tips on dementia care
Professor Louise Robinson’s tips on the assessment, and subsequent management of, people with dementia
1. D – Diagnosis
Dementia is a clinical syndrome. Common subtypes include Alzheimer’s disease, vascular dementia and mixed dementia, and the less common subtypes, Lewy body dementia, frontotemporal dementia and dementia associated with Parkinson’s disease and learning disabilities. Symptoms include memory loss, communication issues and changes in personality and functioning.
A GP should identify:
- Who needs referral for specialist assessment.
- If there is a potentially reversible cause such as illness (depression, thyroid) or drug-related anticholinergic burden, assessed by the ACB scale (acbcalc.com).
NICE guidance states people with suspicious symptoms and signs should have further assessment by a specialist with relevant expertise1, (which can now be a GP), even if they score highly on brief assessment tests. Exploring patient concerns and openly discussing their worries about dementia can be helpful at this early stage.
Primary care should undertake an assessment of the three Cs:
- Cognition – use brief, validated tools such as the 10-point cognitive screener (10-CS), the six-item cognitive impairment test (6CIT) or GP-COG, rather than the longer MMSE.1 Asking the patient to draw a clock, number it and draw a time on is also a quick, useful, validated test.
- Capabilities – how are their usual activities of daily living affected?
- Carer history – an account from someone who knows them well.
2. E – Early intervention
Following diagnosis, the patient and their main carer should be reviewed by the GP who referred them or knows them best. In the first few months, discuss2:
- Diagnostic support – the need for further support from specialist services such as dementia advisers or general counselling.
- Future medical care – allocate a named practice professional (such as a GP or practice nurse) or a dementia professional closely linked to the practice or family who can act as a care coordinator1 and is competent to carry out annual dementia reviews. Continuity of medical care, especially as the illness advances, is generally appreciated by the patient and their family. A practice GP dementia lead can also be really helpful for managing continuity of care.
- Future care planning – lasting power of attorney (LPA) is usually mentioned early on by memory clinics. LPA should be discussed while the person with dementia has capacity to agree to this legal document. There are two types of LPA, one for health and wellbeing and one for financial issues. They are separate documents and attract separate legal fees.
3. M – (Drug) management
There are several cost-effective dementia drugs that slow the rate of deterioration, hopefully maintaining quality of life and functioning for longer.1 These are:
- Anticholinesterase (AChE) inhibitors: donepezil, galantamine and rivastigmine. NICE recommends these in mild to moderate Alzheimer’s disease and mixed dementia.
- Memantine: for moderate Alzheimer’s and mixed dementias or AChE inhibitor intolerance or contraindications.
Important prescribing changes for primary care arose in the 2018 updated NICE guidance:1
- These drugs can now be started by primary care following specialist recommendation.
- Drug treatment should continue as long as there are beneficial effects on the person’s quality of life and general functioning, not just cognition.
Shared-care protocols are helpful to support primary care in monitoring ongoing prescribing and also deciding when to stop therapy and adopt a more supportive, palliative approach to care.
4. E – Effective carer support
People who are caring for relatives or friends with dementia have a greater risk of both physical and mental ill health compared with other carers.1 Usually the main informal carer of a person with dementia is their spouse or child; these people may also be on the GP’s list. They are entitled to a carer assessment of their own needs and access to psychoeducation and skills training.1,3 Helpful information includes:
- Practical and emotional support and legal and financial advice (for instance, about LPAs).
- Voluntary organisations such as Alzheimer’s Society and Carers UK.
- Local specialist services such as dementia cafés and dementia advisers.
Admiral nurses (from the charity dementiacarematters.com) are specialist nurses for families living with dementia; however national availability is limited. It is useful to record next of kin contact details in the GP records of a person with dementia. If there is no LPA, such information can help with shared decision-making.
5. N – Non-drug management
High-quality research on behavioural and non-drug interventions to improve cognition, function and quality of life for people with dementia and their informal carers has increased considerably.1 Such approaches include:
- Cognitive stimulation therapy (CST).
- Reminiscence therapy.
- Occupational therapy.
CST, a group intervention developed and tested in high-quality randomised trials by a UK team, is recommended by NICE for people with mild to moderate dementia.1 Training is available and can be provided in a range of settings (cstdementia.com).
6. T – Treatment of complications
Some of the most difficult dementia ‘complications’ to manage in primary care are behavioural issues, now often called ‘behaviours that challenge’ (such as agitation, aggression, wandering and sexual disinhibition). An excellent evidence-based pathway exists called ‘Optimising the management of behavioural problems in dementia’, available online (alzheimers.org.uk). Common principles include:1
- Identifying and managing any treatable cause (such as pain, depression, infection or constipation).
- Using non-drug approaches first: the ABC approach is useful – identifying the antecedents (triggers), the specific behaviour and the consequences of the behaviour. This is used by community nurses and care home staff.
- Finally, drugs: risperidone, at the lowest dose possible, is the first-line treatment.
Because antipsychotic drugs carry an increased mortality and morbidity when used in people with dementia, they should be given for a maximum of 12 weeks and regularly reviewed. If prescribing is to continue, a risk-benefit assessment should be documented in the medical records.
7. I – Information provision
The GP has a key role in ensuring dementia patients and their carers are well informed about living with this illness. Information should be individually tailored and reviewed at regular intervals. It is not expected that GPs should be experts in this area, but they should be able to signpost their patients to local and national specialist resources such as Alzheimer’s Society, The Lewy Body Society, Dementia Matters and Carers UK.
Fitness to drive is a key concern for the person with dementia and their families. The former often feels they are more capable than their families believe they are. Practical guidance is now available for doctors.4
Referral to a local driving assessment centre for a formal objective assessment can be very useful.
The compulsory annual dementia review, a core part of the primary care QOF, is an ideal time to review such areas in detail.
8. A – Advanced dementia and end-of-life care
Key challenges associated with caring for people with advanced dementia include:
- Loss of mental capacity
- The person with dementia will steadily lose the ability to communicate their wishes and to make decisions. Assessment of mental capacity according to the Mental Capacity Act (MCA) 2005 is via a two-stage test:
- Does the person have an impairment of their mind or brain as a result of illness or external factors such as alcohol or drug use?
- Does the impairment mean the person is unable to make a specific decision when they need to?
- Mental capacity can fluctuate. People can lack capacity to make some decisions but have full capacity to make others. The MCA says a person is unable to make a decision if they cannot:
- Understand the information relevant to the decision.
- Retain that information.
- Use or weigh up that information to make the decision.
- Communicate their decision verbally or non-verbally.
An LPA comes into force when the person with dementia loses capacity, and the named decision-maker is then consulted for future issues. If there is no LPA, the MCA recommends ‘best interests decision-making’ and consultation with key people including family and professional carers.
- Management of distress and related symptoms
- People can either die from dementia or with dementia; either way the dying trajectory is usually long and unpredictable. It is useful to tell families this and that it is hard to predict the prognosis. It is useful to consider the ‘surprise’ question (‘would you be surprised if this patient died within in the next six to 12 months?’) – but equally you should tell them you would not be surprised if the person didn’t.
- Physically the patient will become frailer, lose interest in eating, have swallowing difficulties and become immobile, incontinent and prone to infections. Assessment and management of pain and other symptoms is difficult because of the person’s inability to communicate. The concept of ’distress’ is helpful; NICE recommends the use of pain and distress assessment tools in practice but no one tool is better than another.1 The usual palliative stepped approach to symptom management is recommended but swallowing difficulties may require use of patchesor syrups.
Early discussion of issues such as do not resuscitate orders and the pros and cons of hospital admission is highly recommended.
9. P.S. – Prevention and Screening
Dementia prevention and risk reduction is now a key part of national and global policy; research from large population studies has shown common risk factors to be:1, 5
- Vascular (smoking, obesity, lack of exercise, hypertension, diabetes).
- Genetic for early onset.
- Mental and social factors (isolation, chronic depression, deafness).
A healthy hearts and healthy minds approach is as relevant for dementia as it is for heart disease and stroke prevention and an important role for primary care. Population screening is not recommended in the UK as there is no cure for dementia.
Some have called for targeted case-finding in patient groups at greater risk (such as those with learning disabilities or Parkinson’s disease and those who have had a stroke).
Professor Dame Louise Robinson is director of the Newcastle University Institute for Ageing, professor of primary care and ageing at Newcastle University and an academic GP
- NICE. NG 97: Dementia: assessment, management and support for people living with dementia and their carers. 2018.
- Pink J et al. Dementia: assessment, management and support: summary of updated NICE guidance. BMJ 2018;361:k2438
- Cameron I et al. Assessing and helping carers of older people. BMJ 2011;343:d5202
- Newcastle University. Driving and Dementia. research.ncl.ac.uk/driving-and-dementia/downloads
- Livingston G et al. Dementia prevention, intervention and care. Lancet 2017;390:2673-4