Dr Eugene Tang (pictured) and Professor Louise Robinson discuss the latest recommendations for diagnosing and treating dementia patients, and how GPs can provide support
Read this article to learn more about:
- current trends in the prevalence of dementia
- benefits of a timely diagnosis at an early stage of the disease
- the different methods of managing dementia.
Dementia describes the clinical syndrome where a person's difficulties in language, behaviour, and memory lead to problems for them with managing day-to-day activities. In the early stages of dementia, the person may have difficulty in remembering recent events and as the disease progresses, a wide range of other symptoms such as disorientation, confusion, worsening memory, and behavioural changes can emerge. Progression of these symptoms then leads to further disability, interfering with daily function and social or professional interactions, which can, therefore, affect not only the person with dementia but also their families and society as a whole.
Dementia subtypes include Alzheimer's disease (most common), vascular dementia, mixed dementia (i.e. Alzheimer's and vascular dementia pathology), frontotemporal dementia, and dementia with Lewy bodies. With advances in both chronic disease management and medical interventions, mortality rates are falling and life expectancy continues to increase worldwide. As age is by far the greatest risk factor for dementia1 (see Table 1, below), dementia has been described as the next global pandemic; however, there is emerging evidence that there may be a cohort effect in later-born population dementia prevalence when compared with people born earlier in the century.2
|Age range (years)||Total|
|Adapted from Alzheimer's Society Dementia UK: update 2014. Available at: www.alzheimers.org.uk/dementiauk
Reproduced with permission
The scale of the problem
The second edition of the Alzheimer's Society Dementia UK: update 2014 found that, based on current estimated rates of prevalence, there will be over 1 million people in the UK living with dementia by 2025, and 2 million by 2051.3 It has been estimated that 32% of people born in 2015 in the UK will develop late-onset dementia (i.e. dementia in those aged 60 years and over).4
Placing this in international context, the World Alzheimer’s Report (2015) found that in 2015, 46.8 million people worldwide were living with dementia. This number is estimated to double every 20 years reaching 74.7 million in 2030 and 131.5 million in 2050. These figures are 12–13% higher than estimates made in the World Alzheimer's Report in 2009.5 The World Alzheimer's Report (2015) also estimated the worldwide cost of dementia in 2015 to be US$818 billion with 9.9 million new cases of dementia in 2015.5
In contrast, recent research from large cohort studies has shown that despite our rapidly ageing populations, the numbers of older people developing dementia is not as high as originally predicted2,6 suggesting that dementia, like heart disease and stroke, may be 'preventable' through a 'healthy hearts, healthy minds' approach. This has drawn greater attention to research supporting risk reduction, improved diagnosis, and therapeutics as well as support for those people with dementia and their families.
Dementia national policy and screening
In England, dementia is a national policy priority. The updated Prime Minister's Dementia Challenge in 2015 placed primary care at the centre of post-diagnostic care.7 This includes provisions for information on local post-diagnostic services, as well as ongoing support for carers of people with dementia, to ensure they can manage in the community. With no cure envisaged and low evidence to support population screening in dementia,8 modifiable risk factor reduction has been seen as the most effective way to potentially reduce and delay the onset of new dementia cases9,10 especially following recent evidence of the trends in prevalence.2 The updated policy document has also led to calls for a 'personalised risk assessment calculator' for dementia as part of the NHS Health Check.7 Risk assessment ensures that a diagnosis can be 'early' or 'timely'.7 Despite the fact that there are many published risk scores for dementia in a research context, none are currently in clinical usage due to a lack of external validation in relevant populations to create the risk score.11 In future, this risk assessment could be based on risk factors associated with dementia in a risk score calculator similar to those used for cardiovascular disease (e.g. QRISK2®12), which are used on a regular basis in primary care to counsel patients on risk reduction treatments.
What is the role of primary care?
Individuals with memory complaints often present to their GP first for assessment and referral on to specialist services; however, the initial recognition and diagnosis of dementia can be delayed due to the insidious nature of the symptoms and the perception that they can be attributed to normal ageing.13 In general, GPs acknowledge the benefits of timely diagnosis at an early stage of the disease,14 but there is still some therapeutic nihilism and a reluctance to speak to patients overtly about a diagnosis of dementia.15 This may reflect the lack of confidence GPs have in the quality and availability of post-diagnostic support services14 and could be counteracted by strengthening the relationship between GPs and the specialist.16
Current recommendations for the diagnosis and management of dementia
When an individual presents to primary care with either subjective or objective (e.g. from a carer, family member) symptoms, then the initial assessment should include a careful history from the patient and their main carer or family member. Any medical history that may heighten the risk of dementia should be taken into account, for example, cardiovascular disease, cerebrovascular disease, or neurological disorders such as Parkinson’s disease. Depression in the elderly should not be overlooked as this may be the reason for their cognitive impairment, i.e. 'pseudodementia'. A physical examination should be performed to exclude conditions that can cause memory complaints such as thyroid disturbance, focal neurological signs, and any visual or auditory problems. Baseline investigations should be routinely carried out to look for other treatable causes of memory complaint such as thyroidal problems and vitamin B12 deficiency.
The patient should then receive some form of cognitive assessment.17 The most commonly used cognitive assessment tool is the mini-mental state examination (MMSE);18,19 however, its continued use in primary care is limited due to the time it can take to complete and also issues with copyright restriction.20 A number of simple cognitive screening tools have been developed specifically for primary care use (see Table 2, below) and are as clinically and psychometrically robust as the MMSE.19
|Sensitivity||Specificity||Time to completion|
|Mini-cog Assessment Instrument22||76–99%||89–96%||2–4 minutes|
|6 Item Cognitive Impairment Test23||78.5–83%||77–100%||3–4 minutes|
|Memory Impairment Screen24||74–86%||96–97%||4 minutes|
|General Practitioner Assessment of Cognition (GPCOG)25||82–85%||83–86%||5 minutes|
If a diagnosis of dementia is suspected, this should be discussed with the patient, preferably in the presence of a family member or carer. A decision will then need to be made as to whether he/she should be referred for specialist multidisciplinary assessment by, for example, memory or old age psychiatry clinics. This is to ensure timely access to investigations (e.g. to determine the subtype), pharmacological and psychological interventions, support services and information provision for the person with dementia.17
Following diagnosis, the care of the person with dementia should be shared between old age psychiatry colleagues and community mental health nurses, as well as the primary care team. Management falls into five broad categories:
- pharmacological interventions
- non-pharmacological therapies
- management of behavioural problems
- information and practical support including advance care planning
- carer support.
Shared care protocols are normally in place to provide a framework for GPs to continue prescribing anti-dementia drugs once the decision has been made to start them. There are currently two classes of anti-dementia drugs licensed for use: cholinesterase inhibitors (e.g. donepezil, rivastigmine, and galantamine) and a glutamatergic modulator (memantine). Cholinesterase inhibitors are recommended to manage mild to moderate Alzheimer's disease, with memantine reserved for those with moderate Alzheimer's disease who are unable to take cholinesterase inhibitors, or as an option to manage severe Alzheimer's disease.26 The aim of these drugs is to slow the rate of cognitive decline and treatment should only be prescribed if there is continued perceived global, functional, cognitive, or behavioural benefit as assessed by the patient, their family, and their treating healthcare professional.26
There are a variety of non-pharmacological cognitive interventions available to the person with dementia. The three main approaches include cognitive training, cognitive stimulation, and cognitive rehabilitation,27 although reality orientation and reminiscence therapy are two further approaches.28
Cognitive training focuses on addressing cognitive functions via specific computer or paper-based exercises. Cognitive rehabilitation focuses on personally relevant aims and difficulties where the family member or caregiver may also be approached to help develop coping strategies.27 Perhaps the non-pharmacological therapy with the strongest evidence base is cognitive stimulation therapy.28 The emphasis of cognitive stimulation is to target multiple cognitive domains rather than a single cognitive function. This involves engaging in a range of activities or group discussions to enhance social and cognitive functioning. Cognitive stimulation has been found to show consistent significant cognitive benefit, and in some can be over and above the effect of pharmacological interventions.29 Unfortunately, at present there is a shortage of such specialist services and, therefore, access to these non-pharmacological therapies may not be as readily available in primary care.30
Management of behavioural problems in dementia
At some point the person with dementia will develop challenging behaviours towards those around them. This is termed behavioural and psychological symptoms of dementia (BPSD). Symptoms tend to be grouped into four categories: hyperactivity (agitation, aggression, irritability), psychosis (delusions and hallucinations), problems with mood (depression and anxiety), and instinctual (disturbance of appetite or sleep, apathy).31 Dealing with BPSD is complex and has consistently been a difficult issue for GPs to manage.32,33 National guidance has dictated that non-drug approaches are used first, but this can often be difficult to achieve due to a lack of specialist interventional services (e.g. nurse specialists or psychological services) on a background of persistent family concerns around safety of the individual while waiting for the intervention.34
In 2011, the Alzheimer's Society worked with the Department of Health to develop a best practice guide for healthcare and social care professionals to manage individuals experiencing BPSD.34 This guide advocates holistic management of the individual, including assessment of any pharmacological contributions to the change in behaviour, or whether there are any reversible causes, e.g. pain, constipation.34 The focus is on person-centered care and a watchful waiting period (of up to 4 weeks) as most symptoms resolve without any drug intervention. If the symptoms persist and become more severe despite this approach, then the GP can prescribe a short course of an antipsychotic (e.g. risperidone) unless the person has a diagnosis of Lewy body dementia. When starting these drugs, it is important to assess the risks and benefits for the patient and chronic use should be discouraged. This guidance is currently in the process of being reviewed and updated.
Information and practical support including advance care planning
People with dementia and their families and carers are not receiving sufficient information on their diagnosis nor are they receiving it in an acceptable format.35 Accurate and up-to-date information should be made readily available in primary care through voluntary or third sector organisations such as the Alzheimer's Society, who have published a 'dementia guide' for those who have recently been told that they have dementia (www.alzheimers.org.uk/dementiaguide), or via the 'dementia roadmap' (dementiaroadmap.info), which can provide information to local services. Due to the inevitable deterioration in cognitive function and, therefore, ability to make informed decisions about personal care, advance care planning (ACP) has been encouraged for the person with dementia. Advanced care planning ensures that there is adequate communication and understanding of the care preferences of the individual while they still have capacity to make these decisions. The aim is to reduce and potentially avoid the stress, confusion, and conflict that may arise when these decisions need to be made in the future. Desired outcomes of ACP discussions may include a statement of wishes and preferences, an advance directive for refusal of treatment, or a lasting power of attorney (health and welfare).36
Caregivers of people with dementia are more likely to suffer from poor health and diminishing ability to provide optimal care to the person with dementia.37 Specifically, caregivers have higher rates of depression38 and anxiety,39 and a higher risk of cardiovascular disease than non-caregivers.40 Given this, primary care physicians should endeavour to assess their needs, provide carer support, monitor their wellbeing and health,41 and give advice on financial benefits and respite care. Caregivers should also be involved as contributing members of the care team and be encouraged to share their views during discussions for ongoing care.
Practical support from carers can be obtained via peer support groups, sitting services, dementia cafes, and voluntary organisations such as Carers UK (www.carersuk.org).
GPs are in an optimal position not only to identify at-risk individuals for dementia, but also to coordinate their care once a diagnosis has been made. Early or timely diagnosis of dementia ensures earlier access to treatments, interventions, and support for these potentially vulnerable individuals and their families. The increasing prevalence of dementia will mean that aspects of dementia care will be a common occurrence for the primary care team, and it is vital that GPs are in a position to provide support and information as the demand for dementia services increases.
- The number of people in the UK living with dementia was predicted to increase due to our ageing population; however findings from recent large epidemiological studies suggest it may be possible to delay onset through attention to risk factors, i.e. a ‘healthy hearts, healthy minds’ approach
- Recent national policy developments have included:
- making GPs coordinators of care for individuals with these complex needs
- risk assessment for individuals with dementia
- Although diagnosis and initiation of treatment is started in secondary care for the majority of individuals with dementia, primary care plays a significant role in the initial recognition of dementia symptoms and the subsequent post-diagnostic support. Optimal management at both these stages is crucial to ensure patients are safe and well looked after in the community
- Recognition of the early indicators of dementia can aid the GP to make timely referrals to the memory clinic to ensure early access to treatments and support
- Non-drug interventions can be just as effective as anti-dementia drugs, although access is dependent on local availability
- The majority of people with dementia will develop behavioural and psychological symptoms of dementia at some point during their illness. When they do occur, non-drug interventions should be used during a watchful waiting period first, prior to antipsychotic usage (except in Lewy body dementia)
- Advance care planning can ensure that the patient’s wishes can be communicated even when they have lost the capacity to do so.
GP commissioning messages
written by Dr David Jenner, GP, Cullompton, Devon
- Increasing the dementia diagnosis rate towards 67% of the estimated prevalence is a national priority for CCGs and forms part of the CCG assurance framework
- GP practices have, up until now, been incentivised to increase diagnosis rates through DESs, but these have been withdrawn for 2016
- Access to specialist dementia diagnosis services are vital to ensure that people identified in primary care as being at risk of dementia are evaluated promptly to secure the correct diagnosis (one-stop clinics with CT scanning and specialist assessment are a good example of how this can be achieved)
- Support for people with dementia is truly a collaborative challenge, with important roles for health care and social care to invest in services through the Better Care Fund, and often for the third sector and charities to provide them
- Support for carers and an identification of their needs is now a statutory obligation for local authorities under the Care Act and can be commissioned through local GP practices or other agencies.
DES=direct enhanced services
- Swerdlow R. Is aging part of Alzheimer’s disease, or is Alzheimer’s disease part of aging? Neurobiol Aging 2007: 28 (10); 1465–1480.
- Matthews F, Arthur A, Barnes L et al. A twodecade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet 2013: 382 (9902); 1405–1412.
- Alzheimer's Society. Dementia UK: update 2014. Available at: www.alzheimers.org.uk/dementiauk.
- Lewis F. Estimation of future cases of dementia from those born in 2015. Available at: cdn.dementiablog.org/wp-content/uploads/2015/09/OHE_Consulting_ARUK_FINAL.pdf.
- Alzheimer's Disease International. The global impact of dementia: an analysis of prevalence, incidence, cost and trends 2015. Available at: www.alz.co.uk/research/WorldAlzheimerReport2015.pdf.
- Matthews F, Stephan B, Robinson L et al. A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies I and II. Nat Commun 2016: 7; 11398.
- Department of Health. Prime Minister’s challenge on dementia 2020: produced by Williams Lea for the Department of Health 2015 [7 April 2016]. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf.
- Martin S, Kelly S, Khan A et al. Attitudes and preferences towards screening for dementia: a systematic review of the literature. BMC Geriatr 2015: 15; 66.
- Norton S, Matthews F, Barnes D et al. Potential for primary prevention of Alzheimer's disease: an analysis of population-based data. Lancet Neurol 2014: 13 (8); 788–794.
- Orrell M, Brayne C. Dementia prevention: call to action. Lancet 2015: 386 (10004); 1625.
- Tang E, Harrison S, Errington L et al. Current developments in dementia risk prediction modelling: an updated systematic review. PLoS One 2015: 10 (9); e0136181.
- Siontis G, Tzoulaki I, Siontis K, Ioannidis J. Comparisons of established risk prediction models for cardiovascular disease: systematic review. BMJ 2012: 344; e3318.
- Alzheimer's Society website. The journal of quality research in dementia, issue 3. Primary care and dementia.www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=306&pageNumber=7
- Fox M, Fox C, Cruickshank W et al. Understanding the dementia diagnosis gap in Norfolk and Suffolk: a survey of general practitioners. Qual Prim Care 2014: 22 (2); 101–107.
- Moore V, Cahill S. Diagnosis and disclosure of dementia—a comparative qualitative study of Irish and Swedish General Practitioners. Aging Ment Health 2013: 17 (1); 77–84.
- Russ T, Calvert L, Morling J. Attitudes to shared care for patients with dementia: a survey of general practitioners. Dementia 2013: 12 (5); 606–618.
- NICE. Dementia: supporting people with dementia and their carers in health and social care. NICE Clinical Guideline 42. NICE, 2016. Available at: www.nice.org.uk/cg42
- Folstein M, Folstein S, McHugh P. Minimental state a practical method for grading the cognitive state of patients for the clinicians. J Psychiatr Res 1975: 12; 189–198.
- Milne A, Culverwell A, Guss R et al. Screening for dementia in primary care: a review of the use, efficacy and quality of measures. Int Psychogeriatr 2008: 20 (5); 911–926.
- Martin R, O'Neill D. Taxing your memory. Lancet 2009; 373 (9680): 2009–2010.
- Robinson L, Tang E, Taylor J. Dementia: timely diagnosis and early intervention. BMJ 2015: 350; h3029.
- Borson S, Scanlan J, Brush M et al. The mini-cog: a cognitive 'vital signs' measure for dementia screening in multi-lingual elderly. Int J Geriatr Psych 2000: 15 (11); 1021–1027.
- Brooke P, Bullock R. Validation of a 6 item cognitive impairment test with a view to primary care usage. Int J Geriatr Psych 1999: 14 (11); 936–940.
- Buschke H, Kuslansky G, Katz M et al. Screening for dementia with the memory impairment screen. Neurology 1999: 52 (2); 231–238.
- Brodaty H, Pond D, Kemp N et al. The GPCOG: a new screening test for dementia designed for general practice. J Am Geriatr Soc 2002: 50 (3); 530–534.
- NICE. Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease. NICE Technology Appraisal 217. NICE, 2011. Available at: www.nice.org.uk/ta217
- Alves J, Magalhaes R, Machado A et al. Non-pharmacological cognitive intervention for aging and dementia: current perspectives. World J Clin Cases 2013: 1 (8); 233–241.
- Alzheimer's Disease International. World Alzheimer's report: the benefits of early diagnosis and intervention. 2011. Available at: www.alz.co.uk/research/WorldAlzheimerReport2011.pdf
- Aguirre E, Woods R, Spector A, Orrell M. Cognitive stimulation for dementia: a systematic review of the evidence of effectiveness from randomised controlled trials. Ageing Res Rev 2013: 12 (1); 253–262.
- National Audit Office. National census of community mental health teams for older people-dementia services survey results. NAO, 2007. Available at: www.nao.org.uk/wp-content/uploads/2007/07/0607604_census_results.pdf
- Azermai M. Dealing with behavioral and psychological symptoms of dementia: a general overview. Psycholo Res Behav Manag 2015: 8; 181–185.
- Turner S, Iliffe S, Downs M et al. General practitioners’ knowledge, confidence and attitudes in the diagnosis and management of dementia. Age Ageing 2004: 33 (5); 461–467.
- Somme D, Gautier A, Pin S, Corvol A. General practitioner’s clinical practices, difficulties and educational needs to manage Alzheimer’s disease in France: analysis of national telephone-inquiry data. BMC Fam Pract 2013: 14; 81.
- Alzheimer's Society. Optimising treatment and care for people with behavioural and psychological symptoms of dementia: a best practice guide for health and social care professionals. 2011. Available at: www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1657
- van der Roest H, Meiland F, Comijs H et al. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. Int Psychogeriatr 2009: 21 (5); 949–965.
- Godfrey M, Hackett J. Advanced care planning: policy and real-life decisionmaking? Age and Ageing 2015; 44: 348–350.
- Fonareva I, Oken B. Physiological and functional consequences of caregiving for relatives with dementia. Int Psychogeriatr 2014: 26 (5); 725–747.
- Joling K, van Hout H, Schellevis F et al. Incidence of depression and anxiety in the spouses of patients with dementia: a naturalistic cohort study of recorded morbidity with a 6-year follow-up. Am J Geriatr Psychiatry 2010: 18 (2); 146–153.
- Liu J, Wang L, Tan J et al. Burden, anxiety and depression in caregivers of veterans with dementia in Beijing. Arch Gerontol and Geriat 2012: 55 (3); 560–563.
- Shaw W, Patterson T, Ziegler M et al. Accelerated risk of hypertensive blood pressure recordings among Alzheimer caregivers. J Psychosom Res 1999: 46 (3); 215–227.
- Cameron I, Aggar C, Robinson A, Kurrle S. Assessing and helping carers of older people. BMJ 2011: 343; d5202. G