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Next steps after diagnosing dementia: interventions to help patients and families
  1. Antony Bayer
  1. Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK
  1. Correspondence to Professor Antony Bayer, Routledge Academic Centre, University Hospital Llandough, Penarth CF64 2XX, UK; bayer{at}cardiff.ac.uk

Abstract

The way that a diagnosis of dementia is delivered to patients, what information is provided and what practical advice and support is arranged has a lasting impact and deserves at least as much attention as the process of assessment and investigation. Individuals and their families require an honest yet sensitive discussion about the nature and cause of their problems, using non-technical language and tailored to their priorities and needs. This should lead on to the provision of good-quality information in an accessible format. Priorities for intervention include medication review, attention to sensory deficits, appropriate pharmacological and nonpharmacological treatment, best use of memory aids and strategies and discussion of driving eligibility, financial entitlement and legal advice. Referral onwards should be made to an appropriate individual or service to provide ongoing emotional and practical support and signposting.

  • dementia
  • Alzheimer’s disease
  • disclosing diagnosis
  • information provision
  • carer support
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Introduction

Receiving a timely diagnosis of dementia and its subtype can have many benefits, but also presents many challenges.1 Confirming that changes in cognitive ability and day-to-day functioning has a medical cause and giving the condition a name is often a relief; it provides an explanation for the difficulties being experienced and can reduce anxiety in both the person with dementia and their families and carers.2 3 However, a positive outcome depends on the communication skills of the clinician to deliver a good understanding of the diagnosis and its implications. The clinician should also take responsibility for arranging what happens next.

Unfortunately, the disclosure of a dementia diagnosis is sometimes poorly handled and any postdiagnostic support is too often inadequate.4 Some clinicians are reluctant to provide a precise diagnosis or to explain the prognosis; some avoid using the ‘D’ or ‘A’ word, clouding the truth by using euphemisms such as age-related changes or problems with the blood supply or hiding behind technical terminology such as hippocampal atrophy or neurocognitive disorder. Too often, the time spent in explanation is inadequate, and people still report that the information was given in an abrupt or insensitive manner. By contrast, a clear and sensitive discussion about the diagnosis, tailored to the stage of the condition and the priorities and needs of the person with dementia and those caring for them, should lead on to considering practical interventions to allow all involved to ‘live well with dementia’.5 6

Telling the diagnosis

All people with dementia have the right to know their diagnosis, and most wish to be fully informed.7 It is rarely justifiable to disclose the diagnosis only to the family or to allow them to refuse the person with dementia being told. Rather, the person with dementia must be given the opportunity to learn as much or as little as they want to know. It is not for professionals (or family, or carers) to decide, but to respond by providing information with empathy and understanding. Those affected by anosognosia who may be unaware of their cognitive deficits need handling with particular care to avoid an argumentative or angry reaction.

With patient consent, telling the diagnosis should ordinarily occur in a joint meeting with family. As with any difficult consultation, it will go best when structured, for example using the SPIKES six-step protocol for delivering bad news (table 1).8

Sufficient time must be available to explain complexities in a manner accessible to both the person with dementia and those accompanying them.9 The presence of cognitive impairment means there will be a greater need than usual to repeat information and to check its understanding, rephrasing as necessary. It is helpful to write down the important points so that they can be re-read as often as required and be taken away after the consultation.

It is important to use both the term dementia and its subtype explicitly due to differences in disease course and management. With the growing public awareness of Alzheimer’s disease, this diagnosis may not come as a surprise, but misconceptions and misunderstandings about terminology still need to be cleared up, most commonly the difference between dementia and Alzheimer’s disease. Use of the term probable Alzheimer’s disease is best avoided as it raises the spectre of diagnostic uncertainty and may frustrate and confuse people. Less common conditions such as Lewy body and frontotemporal dementias will need fuller explanation, and terms such as primary progressive aphasia and posterior cortical atrophy are best described as particular presentations of subtypes of dementia, rather than as specific medical conditions. Given that the consequences of stroke are widely perceived in terms of physical function, it may be necessary to emphasise that a vascular dementia is a consequence of a past stroke rather than being a new medical condition. Similarly, unless clarified, many people’s previous understanding of Parkinson’s disease as solely being a movement disorder may suggest to them that dementia is a second diagnosis, or raise concern about previous misdiagnosis.

It is challenging to predict the rate of decline of dementia accurately. Nevertheless, telling a diagnosis without a prognosis has limited value, and clinicians should make an effort to describe honestly the likely impact on independence and survival. It is best to avoid specific numbers, but it can help to explain that dementia overall doubles the risk of mortality; frontotemporal dementia has nearly double the risk compared with Alzheimer’s disease, with other subtypes in between.10

Providing information

The first priority after disclosing the diagnosis is to provide relevant information, both verbal and written (figure 1). Planning another face-to-face meeting soon after initial disclosure is good practice, giving the opportunity to repeat information that was not taken on board initially, to clear up misconceptions and to expand on important issues. It is important to take care to ensure that the person with dementia is always at the centre of discussions, as carers can easily become dominant. With patient consent, separate meetings with the family may help to speak more easily about their particular concerns such as genetic risk, practising a non-confrontational approach to managing difficult behaviours, planning future living arrangements and prognosis.

Figure 1

Relevant written information should be readily available in clinic areas.

It is helpful to direct people to quality information in print or on trustworthy websites. The UK Alzheimer’s Society publishes a ‘Dementia Guide’,11 available in multiple formats and languages. It also has more detailed factsheets on relevant topics as well as introductory booklets addressing younger onset dementia and each of the less common dementia subtypes. These overcome the problem that much of what is available is generic and ‘alzheimerised’. The Reading Well Books on Prescription scheme in England has 37 recommended books on dementia that are all available to borrow free from local libraries. These include not only books giving factual information and advice, but also accounts of real-life experience of living with dementia that some people will find more illuminating.

For those used to getting their information online, NHS England’s Dementia Information Service provides a weekly email to guide people through the first 6 weeks after diagnosis. Providing addresses of reliable websites will help, together with a general warning about the shortcomings of health information online. Dementia Talking Point is the UK Alzheimer’s Society’s online community, allowing anyone affected by dementia to join discussions and to support each other. Setting up a private group with other family members and friends can help with engagement and ensure everyone is kept in the loop.

Social media encourage the exchange of peer-based information rather than the traditional expert-led model, and so provides a more empowered and patient-centred experience.12 Social networking sites such as Facebook host local and national dementia support groups; such online forums may especially help those with less common dementia subtypes who are always in the minority in other settings. Twitter is dominated by links to third-party sites, rather than personal anecdotes or experiences.13 Instagram may help people who are best with visual information. Of YouTube videos about Alzheimer’s disease, testimonial videos have the highest views, suggesting that this is preferred rather than a more didactic approach.14

Table 2 lists some general principles of giving information to a newly diagnosed person with dementia and their carer, and table 3 lists some good sources of information in the UK. For those outside the UK, Alzheimer’s Disease International (www.alz.co.uk) has a link on their homepage to 100 Alzheimer Associations across the world and to information on dementia in 50 different languages.

Table 1

Six-step SPIKES model for delivering bad news8

Table 2

NICE guidance15 on information provision to people living with dementia and their family members or carers at the time of diagnosis. All information should be relevant to their circumstances and the stage of their condition

Table 3

Useful sources of information and support for people newly diagnosed with dementia and their carers

Sources of future support

Clinicians should provide at an early stage the details of a single-named contact who can answer questions and provide ongoing advice, support and signposting to local services. These people are variously termed as dementia navigators, advisers, link workers, key workers or support workers. They are most effective when they have a long-term involvement, with regular face-to-face contact. A key role of the care coordinator is to develop a personalised care and support plan. Ideally, they should come from a healthcare/clinical background and work as part of a multidisciplinary team.16 In Scotland, the government has guaranteed at least a year’s postdiagnostic support from a named individual for everyone diagnosed with dementia.

Major sources of practical guidance and support are third-sector organisations, though service availability differs greatly between areas. In the UK, the Alzheimer’s Society (and Alzheimer Scotland) provide postdiagnostic information and support services for all types of dementia and have a comprehensive online directory of regional and local services and activities. These include Alzheimer Cafés, Singing for the Brain, Games for the Brain, education programmes, befriending and advocacy services, carer support groups and social and activity groups. Their Dementia Connect Programme aims to use expert Dementia Advisors to identify individual needs and to help put personalised support plans in place to address them. The information and support needs of subtypes of dementia are the focus of Rare Dementia Support at the UCL Dementia Research Centre, the Lewy Body Society, Parkinson’s UK and the Stroke Association. Younger people with dementia prefer to receive support from bespoke services rather than the generic provision and there are specific post-diagnostic teams for those of working age available in some areas. Young Dementia UK and the associated Young Dementia Network can provide age-appropriate information, and these have prominent roles nationally in advocating for and supporting younger people with dementia.

Dementia UK offers help to families living with dementia through contact (by telephone helpline and face-to-face) with the Admiral Nurse Service. These specialist dementia nurses help families to understand dementia better and to develop the skills needed to manage the condition effectively and to offer psychological support to family carers.17 Addressing the needs of carers is also the centre of attention of Carers UK and the Carers Trust. NICE recommends that carers should be advised about their right to a formal assessment of their own needs (known as a ‘Carer’s Assessment’), as well as the need for short breaks and other respite care.15 They also should be offered specific psychoeducation and communication and behavioural management skills training. This should be in a format suitable for them, on an individual basis such as the 8-week manual-based START Programme,18 or in group sessions with other carers, or online. People with dementia and their carers also greatly value peer-support groups and networks; this is especially so for those with rarer subtypes, or those with younger age of onset.

Medication

Families often think that drugs are available to ‘treat’ dementia and are eager for an immediate prescription. It is wiser first to instigate a thorough medication review, stopping all inappropriate and potentially unnecessary drugs, especially those with anticholinergic effects and central nervous system depressants such as benzodiazepines and opiates. Whenever possible, dosage regimens should be simplified so that all medication can be taken together once daily. This may reduce errors more effectively than medication compliance aids such as Dosette boxes and blister packs that are widely used, despite little evidence that they improve compliance or safety. They also risk engendering a false sense of security among carers and prescribers that medication will be taken reliably (figure 2).19 20

Figure 2

Aids to medication compliance may highlight non-adherence to drug regimens rather than ensure adherence.

The suitability of antidementia drug treatment depends on the subtype and severity of dementia. Of the available drugs, NICE guidance15 recommends offering a cholinesterase inhibitor (donepezil, rivastigmine or galantamine) as monotherapy in mild or moderate Alzheimer’s disease, dementia with Lewy bodies or Parkinson’s disease dementia. Memantine should be considered for people with moderate Alzheimer’s disease or dementia with Lewy bodies and Parkinson’s disease dementia if cholinesterase inhibitors are not tolerated or are contraindicated, or if someone presents with severe dementia. Memantine also can be added later to established treatment, alongside a cholinesterase inhibitor if dementia has progressed to a moderate or severe stage. The drugs should only be considered for people with vascular dementia if they have suspected comorbid Alzheimer’s disease, Parkinson’s disease dementia or dementia with Lewy bodies (mixed dementia).

Checking the pulse rate before starting a cholinesterase inhibitor is appropriate in all patients, but a routine ECG is unnecessary unless there is bradycardia or history of unexplained syncope.21 Known cardiac contraindications do need to be considered, and it is appropriate to be cautious when people are taking cardiac rate-limiting drugs, such as beta-blockers, non-dihydropyridine calcium channel blockers, digoxin or amiodarone; in such cases, an option may be to reduce the dose or switch to an alternative drug.

All the cholinesterase inhibitor drugs have similar efficacy, but donepezil is usually the first choice and has the advantage of simple dosage regimen. NICE recommends that as long as the recommendation to start has been made by a clinician with the necessary knowledge and skills, the first prescription may be made in primary care. Everyone needs to understand that benefits are likely to be modest and they do not alter the course of the condition, and so they should not be stopped just because there is no improvement or later when the dementia severity increases. Table 4 details the indications, cautions and contraindications for the available antidementia drugs.

Table 4

Indications, cautions and contraindications to available antidementia medication

People with a vascular or mixed dementia may benefit from aggressive vascular risk factor management as recommended for secondary stroke prevention,22 though it should be explained that this can only reduce risk of further damage rather than ameliorate established dementia. In frontotemporal dementia, selective serotonin reuptake inhibitors at high dose may help behavioural and psychological symptoms—especially disinhibition, irritability and depression—though they have no positive effect on cognition.23

No disease-modifying treatments have yet been shown to be effective in established dementia, but many drugs are in clinical development.24 Although exaggerated media reports often stimulate interest in experimental treatments for dementia, all patients should be encouraged to explore opportunities to take part in clinical research. By registering their interest with Join Dementia Research,25 people across the UK can be matched with studies open to recruitment, not just of pharmacological treatments but also of psychosocial interventions and observational studies.

Practical interventions in daily life

Patients and carers usually welcome discussions about interventions to help manage current and future challenges in day-to-day life. Timely referral to appropriate services, such as occupational therapy or social services, will help to keep people living well and should promote autonomy. However, this needs to be conducted sensitively, bearing in mind that the person with dementia may not be fully aware of the extent or implications of their functional deficits, and family carers may need time to adjust to the impact on their own lifestyle and future plans. Ill-timed advice on changes to personal routine and advance care planning, or premature referral to other professionals and agencies, may merely engender resentment, increase patient and carer anxiety and result in unnecessary dependency. Planning ahead is sensible, but for many people with a new dementia diagnosis, there is often little immediate need or benefit from rushing to make major changes to activities and routines that were in place before. It is important to allow time for people to come to terms with the diagnosis and its implications, and for them not to feel they must tackle everything at once.

Younger people with dementia may still be working at the time of diagnosis, and many can continue to do so depending on the type of work. It is appropriate to advise them to talk to their employer at an early stage. Sometimes this is a contractual requirement, but it is also necessary if driving is involved and it is sensible if there are safety issues or legal or financial responsibilities to consider. Seeking advice from a Disability Employment Adviser or involving occupational health or trade union representatives may be helpful. Rather than giving up work, it may be possible to consider flexible working hours or a change of role, bearing in mind that dementia is classified as a disability and therefore employers must make ‘reasonable adjustments’ to accommodate any difficulties. Family carers also have the legal right to request flexible working hours to support the person with dementia.

People with dementia will be keen to keep the brain active. However, while crosswords or puzzles such as Sudoku may be enjoyable for those used to doing them, it is better to suggest more socially oriented activities if people are wanting to take up something new. It often helps to encourage the use of familiar memory aids such as making lists, calendars, digital clocks, wipe-clean noticeboards and strategically placed sticky notes (figure 3). Electronic aids such as smart speakers, locator or prompt devices, dementia-specific apps (for both the person with dementia and carers) and other assistive technology are playing an increasing role in dementia management.26 There is very limited evidence to support the efficacy of formal cognitive training (guided practice on structured tasks to improve or maintain particular cognitive abilities).27 Group cognitive stimulation (regularly engaging in a range of themed activities and discussions in a social setting) has the most consistent supportive evidence and should be offered.28 Group reminiscence (discussion of memories and past experiences using prompts to evoke memories and stimulate conversation)29 and individual cognitive rehabilitation/reablement (focusing on realistic functional goals tailored to the individual, building on strengths and finding ways to compensate for impairments)30 can also be considered.

Figure 3

Simple memory aids in everyday life—a digital clock, shopping list on a smartphone, sticky pad message and magnetic timer alarm.

It is important to identify any significant sensory deficits during the diagnostic workup. There is need then for good communication with professionals relevant to hearing or vision, and for prescription of corrective devices or other intervention as appropriate.31 32 For those with hearing loss, recommending a simple intervention such as ear syringing, or cleaning or servicing hearing aids may be all that is necessary to improve hearing and cognitive performance. If problems remain, then referral to the audiology service is indicated. Those with visual problems, whether due to sight loss or perceptual deficits, may benefit from environmental modifications such as strategic use of contrasting colours, non-pattern flooring and automatic lighting. Uncorrected refractive errors will impair cognitive performance, and so it is essential to ensure that the person has clean, up-to-date spectacles and is using them consistently. Half of postrefraction visual impairment among people with dementia is due to cataracts, and expediting surgery may be appropriate.33

It is also important to emphasise the benefits of continuing to keep socially active and maintaining leisure interests and hobbies. It can help to explain that simplifying activities, decluttering, following a routine and minimising distractions are all likely to help performance. It is wise to emphasise the value of planning ahead, allowing more time, doing things one at a time and not taking it for granted that something will work out just because it has never presented difficulty in the past. Clinicians should not overlook giving general advice on maximising physical and cognitive well-being by taking regular exercise, not smoking, limiting alcohol, maintaining a healthy diet and managing other comorbidities appropriately.

Carers should be alerted to the challenges presented by less familiar environments and by the change in routines and the risk of delirium associated with acute illness or surgery. They should also be made aware of ‘John’s Campaign’ (www.johnscampaign.org.uk) to allow family carers of people with dementia to stay with them when admitted to hospital, and of the Alzheimer’s Society ‘This is me’ leaflet (www.alzheimers.org.uk/get-support/publications-factsheets/this-is-me) on which people with dementia record details about their likes and dislikes, routines and personal history that can then be shared with healthcare staff if they find themselves in an unfamiliar setting.

Driving

A diagnosis of dementia does not in itself mean that the person is no longer safe to drive. Many people with mild dementia can continue to drive for the time being, while nearly all those with more severe dementia cannot. Fitness to drive is impaired in non-Alzheimer dementias earlier than in Alzheimer’s disease, due to behavioural or motor symptoms increasing the risk in addition to cognitive factors.34 People in the UK with any severity of dementia require that the Driver and Vehicle Licensing Agency (DVLA) and vehicle insurance company are informed, and it is the clinician’s professional responsibility to explain this.35 If the person is obviously unfit to drive, they should be told this unequivocally and helped to surrender their licence immediately, or the clinician should inform the DVLA on their behalf if necessary. In other circumstances, it is best to reflect with the person on the benefits and risks of driving and to emphasise the legal requirement rather than express a personal opinion on their safety, especially as clinicians are generally poor at predicting this. This also helps to avoid a difficult conversation deteriorating into an argument that will make it less likely the person will accept advice. The clinician should explain about the risk of withdrawal of the driving licence or the likelihood that it will be subject to more frequent review and eventual withdrawal in future. While the person still has a valid licence, a driving assessment at a local centre may help to inform the decision.

Losing a driving licence can be a major blow to self-esteem as well as independence and well-being. An early discussion of practical alternatives is appropriate (eg, public transport, taxis, lifts from friends) so that usual activities and interests can continue uninterrupted. Recent changes to Blue Badge parking regulations in the UK to include people with a ‘hidden disability’ mean that some people with more severe dementia may now qualify, helping carers with parking closer to where they need to go.

Finances, benefits and legal issues

Many people with dementia and their families have concern about finances.36 Younger people with dementia, in particular, may have to consider early retirement, and they are more likely to have dependent children and other commitments such as a mortgage. Citizens Advice offices or local welfare rights officers can provide advice on benefits and help with applications. Simplifying money management will help to reduce risks. A third-party mandate will allow help with banking, but is only valid while the person retains the capacity to manage their own account. Direct debits to pay regular bills will ensure they are not overlooked. Paying for things with debit or credit cards may be easier using contactless payment, or a chip and signature card that avoids problems with remembering PINs. Some people may be entitled to the attendance allowance (or personal independence payment if under age 65) depending on the severity of their dementia and its impact on daily living activities; they may then be disregarded when calculating council tax payments if they have ‘severe mental impairment’.

While people still have the capacity to do so, they should be encouraged to make a will and a Power of Attorney. This can be done through a solicitor, or online. The Alzheimer’s Society also offers a digital assistance service to help someone to complete the forms on the person’s behalf. At an early stage, it may be appropriate to start discussing other aspects of advance care planning,37 such as making an advance statement expressing priorities and preferences for the future, and an advance decision to refuse treatment (advance directive in Scotland and Northern Ireland). There is specific help with this available, such as the ‘Planning for your future care’ guide38 and the ‘Coordinate My Care’ service (www.coordinatemycare.co.uk) currently available across London, UK. If a person has already lost mental capacity by the time of diagnosis, a carer or family member can apply to become a Deputy (or equivalent) that may allow them to make certain decisions on the person’s behalf.

Concluding remarks

Receiving a dementia diagnosis is life changing, not just for the person directly affected but also for their family members and others who will be caring for them. They should not be left with uncertainty about what the diagnosis means, what interventions may help and how these can be arranged. What they want is:

  • Complete information about the condition, presented in non-technical language.

  • Recognition that the person with dementia and family members may each have differing values, priorities and concerns, and their own individual circumstances and needs.

  • Timely advice, treatment and practical support that will keep the person with dementia as independent as possible throughout the course of the illness.

  • Someone to talk to who understands their worries and wants, and can put them in touch with appropriate help at the time it is needed in the future.

Those responsible for assessment and diagnosis must, therefore, put as much time and effort into what happens next, telling the diagnosis sensitively but clearly, engaging patients and family in all decisions, and ensuring planned follow-up meets individual needs.

Key points

  • Most people with dementia want to be told their diagnosis, using non-technical language and avoiding euphemisms.

  • The person with dementia should not be excluded from discussions, and carers should not dominate the consultation or takeover; both have needs that should be addressed.

  • Verbal information should be supplemented by good quality written information, in print or on trustworthy websites.

  • Interventions should be individualised, appropriate to the stage and subtype of dementia and tailored to each patient’s and carer’s needs and priorities.

  • Details of a single named contact should be given after diagnosis, to answer questions and provide ongoing advice, support and signposting to local services.

FURTHER READING

REFERENCES

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Footnotes

  • Contributors Antony Bayer was the sole contributor, responsible for conception, writing the original manuscript and subsequent revision.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Commissioned; externally peer reviewed by Jeremy Isaacs, London, UK.

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