What is dementia and how is it experienced (it impact on sufferers, familes carers and society)

Person-centred care and personal identity

Making decisions (judging the best interests of a person, legal capacity, advance decisions

Aspects of care and support (Lying, restraints, electronic tagging, etc)

The needs of carers

Research

What is dementia and how is it experienced?
Q1       In your opinion, what aspects of dementia have the greatest impact on the lives of people with dementia, their families, their carers, and society more generally? What kind of support is needed most by people with dementia and those caring for them?

A: The impact of dementia depends very much upon the stage of the disease, the spectrum of neurological impairment and the person who has dementia; their personality and the resources that they can draw upon in meeting the challenges of the diagnosis In early disease perhaps the most noticeable changes are those relating to cognition, in particular memory, language, computational skills and decision making.  This commonly leads to a greater dependence upon those members of the social network providing support to the individual.  These impairments can lead to fear, anxiety, frustration and conflict, both on the part of the person with dementia and their carers.  However, positive impacts include reaffirming previously tenuous relationships and even the development of new relationships within the social network as those surrounding the individual seek to assist.  Support must focus on enabling the person, and those around them, to sustain skills and to draw upon the strengths within their personality and previous experience.  Those who provide care need to gather as much information as possible about the persons past and personality in order to maximise potential throughout the disease trajectory.

Later on in the disease process and according to the spectrum of disability generated by the dementia, new challenges will arise for example mobility if the ability to drive is lost.  For the person with dementia this will include loss of ability to provide personal self care, execute day to day tasks to manage their property and affairs, and maintain a safe environment.  The individual may also lose social skills and as a result become withdrawn from their social network.  This often places a greater burden of care upon the social network and again can lead to conflict, anxiety and distress. 

More subtle impacts of dementia relate to loss of personal autonomy and possible changes in personality, which can lead in turn to loss of personhood.  Particularly with more advanced dementia, a frequently made observation by family and carers is that the person they now care for is a different individual from that they originally knew.  This places great pressure on all individuals in forging and maintaining productive relationships, the focus of which increasingly becomes that of care provision rather than socialisation.  The high risk of delirium in people with dementia is important by virtue of the ensuing health care crisis and disruption

Those with dementia and those caring for them at all stages in the disease require adequate provision of information from professionals and care staff trained and experienced in caring for patients with dementia.  This includes a wide spectrum of information relating to both the disease process itself, the diagnosis, the likely progression and prognosis, the treatment options and availability and access to care networks.  In particular, information about resourcing of available care appears to be becoming increasingly difficult issue in the light of changes to the NHS continuing care funding procedures from October 2007.  Navigating patients and their carers through the various funding streams and processes of application is a skilful and time consuming activity.  Timely and proactive professional person centred support and information giving rather than passive post hoc crisis management is, therefore, essential to prevent distress and avoidable worsening of disability.

Q2       From your own experience, can you tell us about any particular situations affecting people with dementia which raise ethical problems?

A: Consultant geriatricians and other professionals are often faced with a range of issues relating to the provision of health and social care.  However, there are a number of stereotypical circumstances which arise commonly:

• Consent to receive medications.  Often patients become unwilling to accept medications, particularly in the advanced stages of dementia, leading to difficult ethical decisions around the covert administration of medications in the patients best interests.  This often leads to a range of professional difficulties given that professional values normally dictate against the covert administration of medicines.  This is particularly difficult where the patient’s mental capacity fluctuates and their refusals may, on any given day, be either valid or invalid. 
• Refusal of food and fluid.  Often in the advanced stages of dementia geriatricians are faced with difficult decisions regarding the need to provide artificial nutrition and hydration.  There are often a wide range of views presented, ranging from the necessity to provide food and fluid as a basic humane care through to the futility of forcibly providing nutrition and hydration via medical means in a patient who will achieve no discernible benefit.  This can, on occasion, lead to conflict with family, particularly where there is a range of views within a given family.  In some cases this can lead to family taking matters into their own hands and certainly it is not uncommon for families to attempt forcible feeding against the patient’s apparent refusal and despite apparent distress.
• Provision of health and social care in a given location.  Geriatricians and other health and social care professionals are often faced with difficult choices around the location of care for a patient with advancing dementia.  This is particularly the case where the ethical obligation to provide benefit and prevent harm (based on the ethical principals of beneficence and non- maleficent) conflict with respect for patient autonomy.  Patients with advancing dementia may not have adequate insight into their disabilities and risks and may be unable to execute legally valid decisions despite expressing views.  Perhaps the most common scenario is that of a patient expressing a strong desire to return to their own home and live independently when the professional and family view is to the contrary in that they would be at significant risk of harm should they be allowed to return to their own home.  Even utilising the recommendations within the Mental Capacity Act using “best interest” guidance and “least restrictive alternative”  professionals are often left feeling uncomfortable with placement of an individual in a new environment effectively against their wishes.
• Chemical Restraint there is evidence of the over use of anti psychotic medication for people with dementia, particularly those who live in care homes.  This is described as unethical restraint.  Such intervention may have been preferred as person centred approaches, whereby behaviour is examined and addressed through exploration of its meaning in terms of the persons history and personality, are more labour intensive.

Q3       From your experience, do different ethnic, cultural or social groups have different understandings of dementia? If so, are these different understandings relevant to the care of people with dementia?

A. Yes, different ethnic cultural or social groups do have different understandings of dementia.  Not only is it not accepted as an illness in a number of cases, but also different explanations are given for the development of cognitive problems.  Sometimes this is due to long held beliefs, both cultural and religious.  In some instances, dementia is thought of as some kind of curse that has befallen them due to wrongdoing in the past.   Considering the fact that dementia itself brings with it problems of comprehension and reaction, in the case of  minority ethnic and cultural groups, the problem gets compounded due to the exaggeration of slightly abnormal behavioural patterns, which are common to all dementia sufferers, eg stubbornness and suspiciousness, both of which may get worse with the progression of the illness.

Language difficulties also make things more difficult and as we know, the second language, often here English, is the one that is first to get affected.  There may be a lack of awareness of dementia within the minority ethnic communities, for instance many of the Asian languages do not have an equivalent word for dementia.  Symptoms may therefore be unrecognised or misunderstood (See V Seabrooke and A Milne 2004 Culture and care in dementia: the study of the Asian community in North West Kent, London: Mental Health Foundation).

In some communities, a lack of understanding and the stigma attached to dementia may prevent families from seeking help.  This may particularly be the case where the community culture places great emphasis on self reliance. 

Unfamiliarity with social services and in some cases some mistrust brought on by misunderstandings about the role of social services does play a role.  The lack of a professional interpreting service may make it difficult for social workers who do not speak the older person’s preferred language to conduct an effective assessment.  Using friends or family members as interpreters may compromise confidentiality  or influence the assessment. 

Standard screening and diagnostic tests for dementia run into problems quite often in the ethnic minorities.  For example, the minimental state examination (MMSE), even with an appropriate translation, is more prone to give an erroneous result.  To meet the clinical criteria for dementia, cognitive impairment must be of sufficient severity to interfere with activities of daily living and cross cultural research on dementia must contend with the fact that assessments of both cognitive impairment and daily functioning are susceptible to culturally dependent definitions and are quantified by measures that are sensitive to cultural and educational background.

In the care of people with different ethnic and cultural backgrounds, the most important thing is that the professional carer or the clinician must firstly be aware of the existence of this difference and respect that point of view.  This needs to be discussed with the family and the carers and the professional carer or the clinician must be prepared to make changes in the management of the individual within the constraints of the treatment plan.  This takes more time and patience. 

Denial of the illness makes a late presentation of dementia not uncommon in the minority groups.

Q4       What kind of ethical questions are raised when providing care in a multi-cultural context and how should these issues be addressed?

A. A number of ethical questions are raised when providing care in a multicultural context.  Ethical issues that invariably crop up in the diagnosis and management of dementia sufferers and which often causes a difficult problem for the professional carer, especially the doctor, is even more difficult in the ethnic and different cultural groups.  Long held beliefs, both cultural and religious, need to be fully taken into account when conveying the diagnosis to the patient.  Informed consent – a procedure of disclosing relevant information so that the individual may choose freely – is usually not an easy task but with the cultural and religious influence, this often is a more difficult task.  Well informed consent is very important in terms of agreeing on the management plan, both in terms of treatment with medication and also in the non pharmacological management, which is so very important in this situation.

Ethnic minority families often view nursing homes as a “choice of last resort” with a high level of strain introduced into the family unit with the decision to agree for a sufferer to go into institutional care. 

End of life management in terms of environment, method of feeding and preparation for death all need careful thought and planning and should always include the family and this must be done with due consideration to religious and cultural beliefs.  In dealing with minority patients, care providers must be sensitive to a family centred style of information sharing that may directly conflict with their training in adherence to the patient’s autonomy model.  Attention to cultural beliefs and practices and inquiring whether an individual patient adheres to these cultural beliefs will enable the provider to set up a comprehensive and compassionate palliative care service at the end of life.

Q5       What current developments in scientific understandings of dementia, or developments that are on the horizon, do you consider the most significant for the care and treatment of people with dementia?

A: There is a developing body of knowledge with regard to the use of technology in enabling people with dementia to remain in their own home, with a reduced level of risk.  This will enable the ethical decisions around change of place of residence, as mentioned above, to be delayed or indeed avoided.

Current initiatives examining the potential over use of anti psychotic medication for people with dementia in care homes will address concerns about chemical restraint.

The forthcoming National Dementia Strategy for England will do much to politically raise the plight of people with dementia and their carers.

Q6       Given the possible benefits, but also the risks, of early diagnosis, when do you think a diagnosis of dementia should be made and communicated to the individual?

A: The diagnosis of dementia can often be a lengthy and time consuming process (a correct diagnosis really requires 6 months of symptoms, some of which can be historical).  An individual may need to be frequently assessed over a period of time before a final diagnostic label is given to the patient.  It is important clinically to give as accurate a diagnosis as possible and to outline possible treatment and intervention strategies in the light of that diagnosis.  However, it is also necessary to re-evaluate that diagnosis in the light of treatment interventions and the progression of time.  This process can, of itself, lead to uncertainties for the patient and their carers, often at a time when they themselves have already considered the diagnosis of dementia. 

In the interests of preserving patient autonomy and choice, it is important to convey as much accurate diagnostic information as possible to a patient and timing of this is often a matter of professional judgement combined with patient choice.  However, reserving diagnostic information over a lengthy period of time can accumulatively increase distress and anxiety through uncertainty.  At the very least it is, therefore, necessary to explore the ideas, concerns and expectations of a patient early in the diagnostic pathway and appropriate tact and sensitivity with the diagnosis of dementia should be raised at an early stage where the clinical suspicion is strong.

Q7       In your experience, how do you think society perceives dementia? Do we need to promote a better understanding of dementia and if so, how?

A:  The social perspective of dementia is influenced by an ageist perception that cognitive decline is an inevitable consequence of ageing.  Legislation with regard to pejorative acts against older people may service to influence perceptions.
 
Public awareness of dementia, particularly through the media is somewhat skewed towards the end stages of the disease process with portrayals of extreme disability and dependency.  This has led to very negative perceptions of the disease process and imparted a fear of the diagnosis.  This is likely to increase denial in those who suspect they may be developing dementia, and particularly in those members of that individual’s social network. 

It is certainly the case that improved societal understanding of dementia will help to challenge these negative beliefs.  Rather than depersonalise and devalue individuals with dementia, society must be educated to enable the potential benefits of a diagnosis of dementia to be better appreciated.  Positive images of, for instance maintained family relationships and values, will help to challenge the largely negative and depersonalised view that pervade society, particularly via the media.

Q8       What part, if any, does stigma play in the process by which people seek care, treatment and support for dementia?

A: Stigma is a prominent part of dementia and a negative and often destructive influence.  This perhaps can be paralleled with the stigma attached to the diagnosis of cancer.  Even in the last decade the de-stigmatisation of cancer diagnosis created in part through more positive public perceptions, including the possibility of cure, have led to a much greater willingness for individuals to discuss cancer openly.  Such a de-stigmatisation process must be undertaken at a societal level with dementia.  Not only will this create greater societal awareness, understanding and sensitivity towards those with dementia, but will also enable patients and their families to seek out assistance earlier permitting more accurate diagnosis and the institution of effective interventions to preserve quality of life. 

Concerted national campaigns such as that run in part by the BGS – ‘Delirious about dementia’ can have an impact on professionals – the equivalent is need for the general public.

Q9     Should more be done to include people with dementia in the everyday life of communities? If so how, and if not, why?

A: Depersonalisation and loss of personhood underlie the lack of value attached to individuals with dementia.  The spectrum of cognitive disorder within an individual is often patchy rather than global even at the advanced stages and we need to challenge the general perception that those with a diagnosis of dementia are burdensome to society with little to contribute.  Nothing could be farther from the truth.  Many individuals with dementia, particularly at the early stages, continue to function productively within society and should not be prevented from doing so.  It is perhaps easy to judge societal worth on the basis of economic contribution or economic burden.  It is a mistake to use such measures for those with dementia and important to find other more positive values on which to assess the societal worth of an individual.  In this respect many parallels exist with the challenges to society mounted on behalf of those with learning disability in recent years. A good example of integrating older people generally, and potentially those with dementia is the OnLok scheme from the US – intergenerational living complexes: http://www.onlok.org/

Person-centred care and personal identity

Q10     Is the idea of person-centred care helpful, and if so, in what way?

A: Given the highly personal impact of dementia creating a very individualised illness, the concept of person centred care is not only helpful but essential.  However, it is a term which has been used in a somewhat superficial way until now and its current application in clinical settings must be challenged.  True person centred care requires comprehensive and sensitive evaluation of the person as opposed to the illness or the diagnosis.  This is not a discreet time limited process and requires development of robust and effective relationships between the individual, their carers and professionals.  Unfortunately, such an approach is of necessity likely to consume significant amounts of resource and it is all too easy in a resource constrained health and social care system to pay lip service to such approaches.  When properly undertaken, person centred care can enable the individual to preserve autonomy by facilitating choice.  One relatively simple example is to encourage the use of personal narratives to assist in caring for those with dementia. These are story boards about the individual, containing names of loved ones and other important aspects of that individual’s life, which is kept at the bedside, for example. In a hospital setting, this information can be helpful in ‘talking down’ someone who becomes disorientated or agitated. More generally, they help to focus carers on the individual and not the disease.

Q11     In your view, to what extent is it correct to say that dementia changes a person’s identity?

Q12     What implications can radical changes in mood or behaviour have for relationships, family ties, and for respecting values and wishes held before the onset of dementia?

A: The way in which the carers of a person with dementia react towards the person may be adversely affected by any experience of mood or behaviour that impacts on their well being.  Carer stress can be minimised by early intervention, information and guidance but, as with the person with dementia, carers will vary in their personal biography and therefore their ability to adapt.

Under the considerable stress of caring emotion may lead carers to misrepresent the former views of the person they care for. 

Making decisions

Q13     When judging the best interests of a person with dementia who lacks capacity, how should the person’s past wishes and values be balanced with their current wishes, values, feelings, and experiences?

A:              The first thing to say is that in English and Scottish Law mental capacity is decision-specific so there is no general answer.  It is important that before best interests criteria are used it has been adequately established that  the person lacks mental capacity and reasonable steps have been taken to enhance the older person’s decision making ability and support them in decision making.  Assuming that it is legitimate to invoke ‘best interest’ tests it could be argued that it is not necessarily in someone’s best interest to override something known to be a firmly held view that that person has had, as this is in itself contrary to respecting dignity and autonomy.  Advance refusals of treatment further codify this.  However, for the foreseeable future most patients will not have advance refusals of treatments or necessarily formal proxy decision makers.  Moreover, although there may be some specific and clearly expressed views e.g., around gastrostomy feeding, cardiac resuscitation or moving into long term nursing care, no older person with dementia will have been able to envisage the full range of possible scenarios.  Therefore it will often not be possible in someone who now lacks decision specific capacity to gain much insight from their previous views or written statements.  Moreover, there are circumstances (e.g. someone saying earlier in life that they would never wish to go into long term care) which family members may feel honour-bound to respect as much as they can but which in the end simply become untenable because of the strain on the carers and in this case the impossibility of caring for that person in their own home. 

Therefore overriding the prima facie norm of autonomy is morally permissible so long as it is a last resort, proportionate and the option least contrary to that person’s autonomy and wishes.  If it comes to professionals, sometimes in conjunction with carers, making decisions about the older persons current care when that person lacks the capacity (e.g. about medical investigation, treatment, place of care, discharge planning, risk, medication) then the current legal position under the Mental Capacity Act and Common Law seems morally permissible. So long as the person really does lack capacity, that their former views have been explored, that the best interest treatment is the least restrictive or contrary to their freedoms and it is likely to have a reasonable prospect of achieving its goal then health professionals should be supporting and making such decisions. 

In assessing best interests it might be useful to look at the relative priorities that the older person puts on issues such as independence, pain, quality of life and stress on their carers before capacity had been lost.  The ‘balancing roles’ of Beauchamp and Childress are very useful in this sense as they provide a framework for permissions for overriding autonomy and acting paternalistically.

Q14     What approach should be taken to best interests where an individual is judged to lack legal capacity, but only just?

A:  A concern has been raised here about ‘objective’ versus ‘subjective’ value judgements made by professionals about quality of life.  In reality, it is pretty much impossible to make an entirely objective assessment because this depends on how much weight that individual older person would place on issues such as independence, prolongation of life, suffering, burden to their carers etc.  It would be impossible to rigorously address all of these especially when someone has lost mental capacity.  As long as health professionals do not make assumptions about quality of life (e.g. that nobody would want to go into long term care or be physically dependent and that death would be a preferable alternative) there will always be an element of pragmatism around this. 

As long as there is a reasonable exploration of the person’s former wishes, current wishes, family views and there are checks and balances this is as much as we can hope for.  What we want to avoid is older people with moderate dementia or moderately impaired capacity simply being written off as having no value, or worth and not deserving of interventions that would be routinely offered to people with capacity.

Q15     How should a diagnosis of dementia influence decisions about best interests and appropriate care in connection with life-sustaining treatment?

A:  There are other reasons for impaired decisions than specific mental capacity beyond dementia.  This could include coma, delirium, thought disorder etc.  Therefore, there is no material difference between best interest decision-making in a patient with dementia - apart from the fact that there is more potential reversibility in conditions such as delirium so that there might be a chance to reassess and refine the decision.  However, dementia is a condition with an illness trajectory and a prognosis and this clearly forms part of the equation around best interests.  For instance if someone has severe cerebrovascular dementia, is developing swallowing problems, balance problems, falls and immobility this may influence decisions around the clinical  effectiveness of any potential medical treatment.

A very good example of this is the major systematic review in Journal of American Medical Association 2005 showing that gastrostomy (PEG) feeding in advanced dementia makes no difference to duration or quality of life or comfort.  Therefore the routine insertion of gastrostomy tubes in such patients seems to be a response to family pressure or fear of litigation in many cases rather than an intervention performed in the patient’s best interests. In the United States, there is still a very high rate of PEG tube insertion in patients with end stage dementia, driven by a range of perverse incentives and clearly contrary to the older person’s best interests, not beneficent, possibly maleficent and not supported by the evidence base. So far in the UK, it remains easier for health professionals to refuse such interventions even in the face of family pressure or cultural expectations and this is a good thing.

In the same way, we know that cardiopulmonary resuscitation in frail people with advanced dementia has a very low chance of success for instance in Care Homes (See Conroy SP et al BMJ 20071) .  It is clearly not beneficent to provide an intervention with a low chance of success which could also be burdensome for the individual. 

Q16     What role do you think welfare attorneys should play in making healthcare decisions on behalf of people with dementia who lack capacity? How do you think both minor and more significant disagreements between attorneys and health professionals over the best interests of the person with dementia should be resolved?

A:  If a welfare attorney has a full knowledge of the older person’s lifestyle, wishes etc backed up by advance directives/refusals of treatment this could be useful to professional teams in decision making in persons who lack capacity.  Moreover, it could be argued that respecting the older person’s autonomous decision to appoint a proxy ipso facto entails respecting that proxy’s subsequent decision.  It is too early to say how this will play out in England although there is some growing experience from Scotland with regards to the Adults and Mental Capacity Act 2000 (where the experience has been in most cases health professionals and medical proxy’s unanimously agree about treatment plans (though there are routes of appeal where parties do not agree).

The Nuffield Council has set out, very helpfully, three positions that could be taken with regard to a valid advanced directive:

• That it should be respected even if the carers now believe that respecting it goes against the person’s current best interests (e.g. an insistence on refusing certain treatments which would in reality help the older persons comfort).

• That the advanced directive should be ignored and the person treated in their best interests as judged by relevant professional and family carers (which does beg the question of what the purpose of the initial advance directive is if it is routinely to be ignored).

• The advance directive should be taken into account as one piece of evidence about what is in the person’s current best interests with weight given to other considerations. 

From our point of view, ‘3’ seems to be the most reasonable and pragmatic course of action for reasons outlined above, i.e. that the older person in writing an advance directive cannot think of scenarios or interventions in anything other than the most general terms.  There needs to be consideration of the specifics of their condition at that time.  So for instance an intervention which might greatly enhance their comfort and quality of life and relieve distress might be worthwhile in specific circumstances even if it does contravene an advance directive.  The appointment of a welfare proxy enhances the range of checks and balances to ensure that the older person’s wishes are not casually overridden.  And the experience in Scotland suggests that disputes are relative infrequent. 

With regard to how conflicts between welfare attorneys and professionals should be resolved, clearly the less formal or confrontational the approach the better and the experience in Scotland has been when people do have to go to arbitration it can be a time consuming and distressing process.  If at all possible professionals and proxy’s families should be encouraged to sit down and have informal discussions perhaps facilitated by an independent mental capacity advocate.  Second opinions on the advisability and effectiveness of proposed treatments or withdrawals of treatment should be sought and in most cases we would envisage that disputes will be resolved at this stage.  However, if independent legal arbitration is to be employed this needs to be provided very rapidly.  Often dilemmas around commencing or withdrawing treatment or around place of care require quick decision making especially in the older person that is frail and has limited life expectancy. 

We believe there are risks around the role of welfare attorneys and they will require a few years of experience of the Mental Capacity Act in action to see how these manifest.  Essentially for circumstances where there is no clear advance directive a welfare proxy may even, in good faith, make a decision which is contrary to the person’s best interests or motivated by their own agenda’s. Drafting clinically relevant, valid and applicable advance care planning (ACP) documents is difficult; only 10-62% of ACP documents relating to hospital treatment contain sufficient information to direct care2-4; physician agreement about the content of an ACP document varies from 75-88%5. Using ACP documents without prior discussion between the individual and their care provider to predict what that individual would have wanted is accurate 70-75% of the time6-13; however prior discussion increases proxy or physician surrogate decision accuracy8 11 12 14, especially for decisions relating to coma or ventilation15 For instance, when an older person with dementia clearly requires long term care but the welfare attorney tries to obstruct this process or when an older person with dementia clearly does not require long term care and would be better off having a try in their own home but the welfare attorney attempts to pressurise staff into sending them into long term care.  The same might apply for certain investigations and treatments (e.g. adequate palliative care, treatment for mental health problems, use of IV fluids or artificial feeding, treatment of agitation, or behavioural disturbance,  use of continence aids, or provision of equipment at home.)

In all these cases even before the Mental Incapacity Act practicing geriatricians experience a pressure from families either to provide treatment which the professionals feel is not indicated or to withdraw treatment that they feel is likely to be clinically ineffective or burdensome.   Many decisions are often motivated by the agenda’s or belief systems of the carers rather than necessarily the best interests of the older person.  There is no reason to suppose that the legal force behind Mental Capacity will change this but in most cases such disputes are able to be resolved through local negotiation.  When they are not, an impasse can often be reached which again would require a rapidly responsive local arbitration service, followed if needs be by a rapidly responsive and easily accessible legal solution.

Q17     What role, if any, should advance directives (advance decisions) play in decision making? To what extent should people be encouraged to complete such directives?

A: See above.  Either for patients who know that they have early dementia but still retain capacity or for those planning for their future care needs these advance directives are a useful concept. The evidence suggests that people with early dementia are interested in completing ACPs16 17-19. In individuals with cognitive impairment, clinical vignettes may be especially useful when trying to establish advance care plans20 as well as optimising the circumstances of the discussion (calm, quiet environment, use of hearing/visual aids etc)21. Advance care planning improves end of life care for individuals with dementia and their families22 23.
It certainly enables professionals who would otherwise struggle to ascertain that person’s former wishes and views about medical intervention, future care etc, a better understanding and not all older people have advocates or proxies.  However, the specifics of any circumstance, for instance when an older person with dementia is admitted to hospital, multiple medical and social problems cannot possibly be envisaged for every case, so advance directives are probably likely to cover only the broadest issues e.g. around life sustaining treatment, artificial nutritional hydration, long term care, cardiac resuscitation etc.  Even if everybody had completed an advance directive, these would still be useful in only a minority of circumstances and as stated above they should probably only form one part of the decision making in people’s best interests. 

Q18     What are your views about the effect of the Adults with Incapacity (Scotland) Act 2000 or the Mental Capacity Act 2005, or both, on the care of people with dementia? Has the introduction of these Acts made it easier, or harder, to support and care for people with dementia?

A:  The Mental Capacity Act in England has not been in place for long enough for much experience to accumulate.  There are lessons from the Mental Capacity Act in Scotland (Adults with Incapacity (Scotland) Act 2000 – Consent and Proxies BGS Newsletter May 2008 http://www.bgsnet.org.uk/may08/5_mca_scotland.htm ).  We feel it is a very useful development that the former common law tests of mental capacity have been clearly set out in statute.  It is also useful that health professionals are clearly encouraged to assess capacity specific to each decision to recognise that capacity is not static and may need to be reassessed.  It is also a very useful protection for patients that before the ‘best interest’ test can be invoked everything possible should be done to facilitate the person in the decision making and to enhance their capacity.  Legal force behind advance directives will also be useful in certain circumstances. 

The Act also provides a clear protection for professionals acting in someone’s best interests so long as they have fulfilled all the necessary conditions but will also protect professionals who wish to respect someone’s autonomous decisions (e.g. around going home to a risky situation when they are capable of appreciating the risk) and it will be a useful defence against pressure or threats of complaint/litigation from family members.

The potential risks, apart from those set out above in response to Question 17, are that there may be disputes about how much decision specific capacity someone has between various agencies or parties which may lead to difficulty in care planning or to multiple assessments being made.  Also that without the right training and protocols staff may not feel confident in making assessment, or may on the other hand make superficial and inadequate assessments of capacity.  The Mental Capacity Act Scotland has had longer experience and the feedback from our members of the British Geriatrics Society is that although all of these caveats have played out in some cases, they have been relatively rare.

Aspects of care and support

Q19     Is it ever permissible not to tell the truth when responding to a person with dementia? If so, under what circumstances and why?

A:  The first thing to say is that simply because the person has dementia it does not mean they lack mental capacity18 24 25, so mental capacity rather than the diagnosis of dementia should always be the yardstick.  Secondly, even where retention of information due to short term memory impairment it seems reasonable to tell an older person with dementia that one is planning a particular test, to discharge them to a care home or that they have a serious or potentially life threatening medical diagnosis or that they need to take a particular medication and the reasons for this.  However, repeating distressing information, e.g. that the person is no longer able to go back to their own home or has a terminal illness (in someone with short term memory) may merely add to their agitation and distress. 

Exactly the same considerations would apply to someone who did have capacity and did not have dementia as there needs to be an individual judgement about how much information that person really wants for themselves.  In older people who do not have impaired mental capacity it would of course be considered an infringement of their autonomy and consent to treatment to withhold information from them or actively to lie.  If we refer back to the ‘balancing rules’ set out by Beauchamp and Childress laying out conditions for permissions for breaching one of the four primo facie moral norms of “respect for autonomy”, “beneficence”, “non maleficence” and “justice.”  There would be very few circumstances where it would be morally permissible to lie to a patient.  Truthful information is a precondition for respect for autonomy and for consent to treatment and could only be overridden if it could be demonstrated that lying to the patient was a lesser harm or provided a greater benefit than this fundamental breach.  No professional codes of conduct would support this approach. 

However, there are certainly circumstances where having explored the amount of    information a particular individual wishes to have, professionals should not over burden them with information or provide repeatedly distressing information as this is clearly not what the person wants for themselves. 

So how do people with severe dementia and impaired mental capacity differ? 

• If they do not have the capacity to think through a decision, weigh the risks versus the benefits, comprehend, believe or retain the information (as set out in the Mental Capacity Act) there are circumstances where it seems futile to go through the ritual of providing them with more information than they can possibly handle.  However, it is important to attempt this process on several occasions to determine if the individual is consistent in their responses, even if they cannot recall the details.
• There are certainly times when repeatedly telling someone for instance that they need to go into long term care as they cannot cope at home or that their spouse has died several years ago or that they have an incurable condition may do little more than cause repeated distress to that person due to poor short term memory.  This could not be argued to be in their best interests or to improve their quality of care and could lead to considerable anxiety as the person anticipates the future adverse event.
• There are occasions where the use of concealed medication is the only way to get somebody to comply.  Whilst this should be a last resort not a first resort there are conditions such as epilepsy, extreme anxiety and behavioural disturbance, diabetes etc where if medication is not provided the person is likely to suffer a great deal of distress and suffering and so to breach the norm of autonomous consent to treatment could be argued to be a beneficent act which is proportionate and where there is a realistic chance of achieving the goal. 

Another example of a degree of deceit in the person’s best interests is around moves from a person’s own home or hospital to long term care.  Often patients who lack the decision specific capacity to appreciate the risks of going home, who have repeatedly failed at home despite a large care package and who clearly do need long term care are completely resistant to this idea and will keep insisting on going home even when they are so disorientated that they do not even know they are in hospital currently.  Sometimes with such individuals, white lies and gentle cajoling are used when they move to long term care and despite initial resistance or distress they often settle into their new environment very quickly and well.

Almost by definition if someone does not have the decision-specific capacity to believe, understand or weigh the information around long term care needs, it is pointless to engage in repeated full and frank discussions about the fact that they can no longer cope at home as this leads to further distress and therefore white lies such as ‘we are taking to somewhere for convalescence’ are reasonable.

Q20     In your experience, do those caring for people with compromised capacity err too much, or too little, on the side of caution when considering risks? How should freedom of action be balanced against possible risks?

A:  Firstly there is probably a systematic difference between the decision making made in specialist environments, e.g. geriatric medicine, old age psychiatry, long term care homes with a great deal of multidisciplinary experience around older people who have frailty, worried carers or risks at home when compared to non specialist areas.  Even for older people who do not have dementia, there is a societal tendency and a tendency amongst many families to infantilise them, to attempt to overrule their right to take risks and that somehow they should be treated differently from autonomous younger people.  There is also an unfortunate tendency to label older people with medically reversible causes for their problems as merely having problems of old age ‘acopia’, ‘social admissions’ etc (see Oliver D, JRSM April 2008).  Specialist teams caring for older people are used to accepting risk and standing up for the rights of the older person to make decisions for themselves and selling such decisions to family members who may be opposed or attempting to pressurise that person.

Secondly, in recent years the emphasis on things such as data protection, privacy, and dignity in care has tended to mean that if anything health professionals are now more respectful of privacy, autonomy and dignity in some ways than members of the general public.  For instance, the Healthcare Commission will not allow patients names on boards on any public area on a ward.  This has implications for safety, risk and quality of care and yet may have become an overvalued idea.  A survey published in the BMJ of several hundred patients suggested that the vast majority had no objections to their details being on boards in public areas and several studies around the use of data have suggested that most patients do not mind their data being accessed by health professionals for legitimate reasons.  In the same way a study by Vassallo et al examining the views of older people, their relatives and health professionals around the use of various restraints and safety measures to prevent falls in hospital suggested that both older people and their relatives were far more concerned with safety effecting the older person from injury than the professionals themselves who now valued respect for autonomy so highly.  A good example of this is around bed rails which have often been described as unethical and a clear infringement of dignity (even though in some cases they can reduce the risk of falls an injuries – see Healey and Oliver Age & Ageing 2008)

If we move away from these tensions around professional versus public views and ageist attitudes in general towards people with dementia most geriatricians would be of the firm view that wherever possible we should respect the rights of older people with capacity to make decisions for themselves even if these decisions are quite risky (for instance the decision to go back home even when there have been numerous hospital admissions or falls, the decision to refuse treatment even though this treatment might prolong their life or improve their comfort, the decision to refuse social services or equipment even though these might help the person to stay at home).  Where there is a grey area, even with capacity, is that it is not sufficient merely to take their express wishes at face value. 
Although the Mental Capacity Act clearly provides for the right of older people to make decisions that might seem unwise there is onus on the professionals to explore the reasons for making these decisions and ensure that they really do have sufficient information and are not being guided by an unfounded fear or misinformation.  However, as long as adequate exploration and discussion has taken place, we would generally respect their wishes, though at some point professionals do tend to act paternalistically when respecting the wishes of the older person which means that either their carers will be placed under intolerable stress or that justice and resource allocation will be compromised (e.g. by repeatedly setting up large packages of care for an older person who keeps insisting on going home even though they have failed numerous times within a day or two).

When it comes to older people with dementia, if they lack the decision specific capacity to think through the risks and benefits of their actions (then ipso facto they are not capable of autonomous decision making it is reasonable to act in their best interests).  So for instance, a person who has fallen repeatedly and has osteoporosis and is at significant risk of a serious head injury or a hip fracture may not appreciate just how big the risk of falls is, and just how serious those injuries will potentially be for them.  In such cases, health professionals will tend to act paternalistically and this seems perfectly legitimate again referring back to the condition for overriding one of the primo facie norms of respectful autonomy, beneficence, non maleficence and justice. 

Q21            Should any forms of restraint be permissible? If so, who should decide, when and on what basis? Does the law help or hinder carers in making the right decisions about the uses of restraint?

A:  With specific regard to physical restraint, we feel that the overt physical restraint is very rarely used in the care of older people in the UK though there are examples of covert restraint (e.g. the arrangement of furniture, bed clothes, chairs etc).  The conditions in the Mental Capacity Act seem to have this at about the right level i.e. that restraint should be a last resort and not merely a proxy for inadequate levels of assessment, nursing care, medical treatment etc (we know from research on acute confusion or delirium in hospital that it is often under recognised and badly managed and we know from the National Dementia Enquiry that there is an overuse of Neuroleptic drugs for dementia sufferers with behavioural disturbance).  So long as other alternatives have been explored, that the degree of restraint is proportionate to the goal being pursued that the goal (injury prevention) has a realistic chance of being achieved and that the use of restraint is the least possible and reviewed regularly the conditions in the Act seem reasonable. 

The concern would be that restraint ends up being routinely used when other interventions could have been tried with adequate knowledge, training or resource and we completely endorse the view that restraint should never be used merely for the convenience of staff but to enhance the comfort and quality of life of the older individual.  For a more detailed discussion of this, we can supply Dr David Oliver’s final dissertation for an MA in Ethics and Law specifically on the use of physical restraint in older people or a set of power point slides from a key lecture by Dr Oliver on this subject, and also refer to two pieces in the Journal of Medical Ethics (Gastmans and Milisen JME 2006, Sammet K JME 2007) around the ethics of restraint use and to the NPSA report on the use of bedrails in hospital.

Q22     Is specific education in the ethical aspects of making these difficult decisions required to support those who care for people with dementia? If so, how could this be provided?

A:  Yes.  Although there is specific training in most trusts and unitary authorities and protocols around implementing the Mental Capacity Act and although staff in specialist clinic areas (e.g. CMHNs working with dementia patients in old age psychiatry, palliative care nurses etc) will receive formal teaching on ethical and legal aspects of the care of older people and these are included in the curriculum for specialist geriatricians, old age psychiatrists etc.  There is generally very little teaching around the needs of older people in undergraduate or postgraduate medical, nursing curricula (see Oliver D JRSM 2008 and BGS report on undergraduate training in geriatric medicine).  There is less training still on specific needs of older people with dementia and on ethical dilemmas around the care of older people.  How far this will go to combating ageist attitudes infantalisation of older people is hard to say but we believe staff would certainly benefit from such education.

Q23     What ethical issues arise in the use of new technologies such as smart homes and electronic tagging, and how should they be addressed? Why do you think that some of the new technologies, such as tracking devices, are not more widely used?

A:  We realise that the Alzheimer’s Association and the Health Minister have proposed so called ‘electronic tagging’ for persons with dementia and therefore seem to be of the view that the benefits will outweigh the risks.  The thinking is that if the use of such technology truly enables somebody to retain their confidence, remain in their own home and be safer as well as reassuring their families, reducing hospital admissions or the need for long term care and that wearing such a device is acceptable to the older person and the device works reliably then the benefits would greatly outweigh any potential harms. There are a number of collaborative projects in Europe ongoing to look at the usefulness and acceptability of such technologies.

Again there is a difference between respect for autonomous decision making and respect for human dignity and personhood.  An older person who does not fully appreciate how much they wander or how much risk or concern this is causing does not have full decisions specific capacity to decide to wander.  They may or may not have sufficient capacity to decide whether to wear a device or not and we would not advocate that such a device is forced on an older person but if they can be persuaded to wear it and wearing it is not burdensome there is no reasonable moral basis for objection.  Other technologies might include automatic falls alarms for use in a person’s own home.  These may be useful as many people may not wear pendant alarms or do not have the capacity to press them if they fall over.  Around 60% of ambulance calls in the over 65’s are for people with falls and often these people have dementia.  Falls also account for around 40% of casualty attendances in people over 55 and long lies on the floor following falls and alarm-raising are a real issue.  Again, a lightweight device that does actually work and activate a response reliably (without numerous false positives which could become intrusive for the older person) seems a reasonable technology to employ and could be linked to a GPS device so that if someone falls outside their home they can be found.  There do not seem to be significant moral issues about the use of such technology. Click here for a useful example of its benefits in enhancing autonomy and independence from a UK evaluation can be found at

Paradoxically, whilst some older people may feel that the very use of walking aids, social services, or assistive technology solutions may compromise their independence or “label” them as old, these may be the very things which enhance their capability to remain living independently.

A two way voice communication, smart devices to control a person’s environment (e.g. ensuring doors are locked, cookers not left on, taps not left running etc) might all promote an older persons ability to remain in their own home and safer without any significant harmful effects or infringement of their autonomy or dignity.  Either the person will have sufficient mental capacity to consent to the use of such technology or if they don’t the use of such technology might be seen to be in their best interests so long as it is not merely a substitute for adequate human contact and personal care and so long as it really is in that older person’s best interest to remain in their own home and the desire to avoid moving to long term care is not motivated simply by cost or that the use of such technology is not really being driven by the needs of carers rather than the older person themselves.  Again proportionality is important here as being on the floor with a serious injury, becoming ill because of failure to take one’s medication or putting oneself at risk from appliances might be considered equally more undignified and harmful that the alternative of using the technology.  The same considerations would apply to devices to prompt older people to take medication. 

The moral issues raised by video surveillance might be a little more contentious in that it could be argued to be an intrusive technology which could be seen to infringe an older person’s dignity.  Again this might be something to which they freely consent, or lack the capacity to consent to.  Again a balance must be struck between the potential of such technology to keep an older person safe and in their own home versus any perceived threats to their dignity or personhood and again it is important to consider whether the use of such technology could lead to a deprivation of human contact which the person might feel is beneficial or might be driven more by the needs of carers than the needs of the older person themselves. 

Within the long term care sector other potential technologies include fall alarm devices which sound when a resident tries to leave their chair or leave their bed.  The idea being that staff are able to respond and attend to them in order to prevent potentially injurious falls. (For further information, Dr Frank Miskelly from Charing Cross Hospital/Imperial College and a geriatrician has a great deal of experience to share).  It could be argued that such devices are intrusive, undignified and a form of physical restraint (because every time an older person attempts to get up there is an alarm response). 

Again, it is important that these technologies are only used if they are effective and reliable and if all reasonable alternatives to minimise the persons risk have been explored and if they are not really being simply used as a proxy for inadequate staffing levels, training, supervision or observation.  Having expressed all these reservations, precisely the same considerations apply as for physical restraints, i.e. that if the person genuinely lacks the capacity to appreciate the risk of falls or injury and that all reasonable alternatives have been tried then it may be reasonable to use such devices. 

Also in the care home sector there is some experience with infra red movement detectors (see Miskelly F Age & Ageing).  The idea being that older people with dementia who tend to ‘wander’ should be allowed to do so as much as possible although there may be circumstances where they wander into areas that put them at high risk of harm.  Such detectors are not warn by the older person themselves and would only result in an action from a number of care home staff if they are activated.  Again despite some concerns about human dignity or personhood it is hard to see how such devices pose serious risks to older people.

All in all the use of new technologies is morally permissible so long as they really do work, that they do not require coercion, that they are not excessively burdensome for the older person and that they are motivated by the older person’s best interest rather than simply the wishes of significant others and they are not used as a proxy for adequate human contact and observation.

Q24     What duties do you think the state owes towards people with dementia and their families, and on what ethical basis?

A:  It is an inescapable fact that healthcare resource is finite and although the UK spends less as a proportion of GDP on healthcare than several western European nations, it is unlikely that every contingency could be adequately covered.  Moreover, as population demographics change there will be an increasing number of people surviving into old age with frailty, cognitive impairment and disability independence.  Even if the ‘compression of morbidity’ scenario plays out - see for instance the projections from 2006 Kings Fund/Wanless Report. 

Traditionally politicians in the UK have been very shy of explicit discussions around the realities around prioritisation, resource allocation and rationing.  The National Institute for Health and Clinical Excellence (NICE) at least sets out explicitly to look at effectiveness and cost effectiveness and this is an advance in transparency.  We realise that the NICE Guidelines on the care of older people with dementia attracted some criticism from bodies such as the Alzheimer’s Association and from pharmaceutical companies.  Also that there was a specific test case around the economic model used to assess cost effectiveness of memory enhancing drugs.  However, we should point out that the NICE Guidelines on dementia care (CG42) did not simply contain recommendations on drugs but on a variety of other aspects of care for older people with dementia.  These aspects have also been flagged up in two publications in which the British Geriatrics Society was involved namely ‘Who Cares Wins 2005’ and ‘Delirious about Dementia 2005’.  We are also aware that there is a current national parliamentary enquiry into dementia care and that the Prime Minister Gordon Brown has announced a consultation about the funding of long term care and that increasingly the core business of long term sector and domiciliary social services is dementia and frailty and an increasing number of people with dementia are being admitted to general hospitals often with other co morbidities.  Yet staff often have poor awareness, training and support to address the particular needs of these older people.

It would seem that in general the emphasis of resource allocation, prioritisation, performance targets, research funding, education and training have all been skewed towards higher tech treatments and ‘sexier’ conditions such as cancer or ischaemic heart disease which effect younger people and away from the needs of older people with incurable long term conditions, frailty and multiple co-morbidity, even though the core business of primary and secondary care is now the care of older people.  We believe that this balance needs to be redressed and the current emphasis distorts priorities.  This applies equally to research funding and priorities (see Question 29) where we know that there is around one hundred times more spent on cancer research than on dementia research currently. 

Older people with dementia often have a mixture of more traditionally ‘health’ and ‘social care’ needs though there is a considerable overlap.  It is unlikely that this state will be in a position to provide comprehensive coverage for all of these needs especially with demographic shift towards a smaller proportion of the population being active income earnings and falling birth rate.  However, we feel there should be explicit and transparent discussions about resource allocation by politicians and that if national values really do prioritise the needs of younger fitter people over those of frailer older people with conditions such as dementia, at least this decision making should be explicit and transparent.  At the moment, whilst explicitly ageist policies are rare there is a great deal of covert ageism.  For instance, much of the push in documents such as ‘Our Health, Our Care   Our Say” and in     Darzi Review is around keeping older people away from hospital as if they are responsible for problems in the system rather than being the core users of hospital care.  A recent survey of 1000 NHS managers (Health Service Journal 2008) showed that they themselves thought that the old and those with mental health issues were the most neglected groups in the new NHS and the least prioritised by targets and pressures. Another example is the National Service Framework for Older People which despite a number of laudable aspirations and milestones around improving care for older people,  targets no earmarked investment (unlike NSF’s Ischaemic Heart Disease). There is similar covert ageism within the values or prestige hierarchies of medical and nursing or education and training for doctors and nurses.  Rationing decisions are also being made by unitary local authorities about how much home care they can pay for or about thresholds for funding of long term care for older people and there is a great deal of ‘gaming’ between primary care trusts, department of social services and sometimes acute hospitals around the funding of long term care.  It would be much better if all of these issues were explicitly addressed and open to scrutiny.

It is not really for the BGS to say what proportion of long term health or social care should be funded state insurance or private provision whether this should be means tested.  However, a condition as common and debilitating as dementia and which is often associated with multiple medical co-morbidities is certainly grossly underfunded at present and dementia care will continue to have major financial implications which need to be addressed. Currently NICE guidelines on dementia, and other common conditions of old age and frailty such as incontinence, stroke, falls and osteoporosis are not being implemented and national audits of care (e.g. from the Royal College of Physicians, London) have shown that most patients do not receive  the care recommended in the guidelines which are based on evidence. This is covert ageist rationing and it would be better explicitly discussed and highlighted. Failing to fund care for such conditions is a false economy as they account for a high proportion of the burden of chronic illness and hospitalisation as well as social service use and long term care provision.

Below are the results of recent analysis of the NHS regarding the provision of assessment, information and support to patients and their families who have presented to the system with memory problems and appear to have dementia.

• Adequate access to specialists, doctors and nurses in old age psychiatry for GPs to refer to, once this diagnosis has been made.

• Adequate assessment of social and healthcare needs (even if means testing means that some of these needs must eventually be self funded).

• Subject to regularly revised guidelines from NICE, adequate access to medical treatments which have been evaluated and mandated by NICE.

• Adequate skills and training in all staff in primary and secondary health care and in social care who are dealing with patients with dementia around their basic care needs.

• Adequate support from the State with legal aspects of dementia care, e.g. around implementation, arbitration for Mental Capacity Act.

• Adequate end of life care for older persons with end stage dementia.

• Adequate undergraduate postgraduate training for health and social care professionals on the needs of frail older people specifically in areas of dementia.

• Equitable levels of research in dementia research considering the scale of this problem and the burden health and social care systems as well as individuals

• In line with emergent findings from the parliamentary enquiry into dementia, the widespread use of sedating drugs or physical restraints is often a marker for inadequate staffing establishment, skills or training to deal with older people who have dementia and this should cease.

The fact that both the initial Royal Commission on the funding of long term care and the subsequent Wanless Report have not been taken up and the linked experiences in Scotland around implementation of continuing care legislation and the governments current consultation around long term care funding as well as challenges and controversies around various NICE Guidelines all illustrate that the problem of resource allocation especially to older people continue to be a complex one.  However, it seems clear that current levels of investment remain inequitable. 

The needs of carers
Q25     How can conflicts between what is best for the person with dementia and what is best for the family carer(s) be resolved, especially as dementia progresses?
Q26     What role should health or social care professionals play in helping resolve such conflicts of interest? What ethical dilemmas do they experience when helping families with a family member with dementia?
Q25 and Q26 can be answered together

A: The principal ethical duty of care for  a practitioner is to the patient and this is re-enforced by professional codes of conduct (e.g. GMC and NMC) and by the duty of care in the common law (as in negligence law) as well as by articles of the European Convention on Human Rights.  However, in the care of frail older people and those with cognitive impairment or who require a great deal of informal and formal support, there does come a point where (and again, reference to the “Balancing Rules” set out by Beauchamp and Childress for specifying the morality of actions in certain circumstances) per force practitioners do have to consider the needs of carers and also distributive justice. Of course, it would be at best “weak paternalism” to override the stated wishes of an older person with dementia to remain at home however risky and however much carer stress, if that person lacks autonomous decision making capacity and appreciation of risk. Autonomy cannot be breached if it isn’t present. At some point the stress on carers, the impossibility of keeping that older person safely at home and the inappropriate use of scarce resource in terms of social service provision means that for the welfare of all concerned the older person with dementia needs long term care even against their will. In the same way, there may be occasions where a carer who is themselves frail wishes to keep the person with dementia at home for reasons of their own (e.g. prior promises) even when it is no longer a safe option.

These (commonly played out) scenarios all assume that carers are acting in good faith (even if sometimes not rationally) for what they perceive to be the welfare of the older person with dementia. However, there are occasions when carers have motivations of their own (from no longer wishing to provide care, to not wanting to lose money in paying for care) which may lead to pressure, coercion, abuse or neglect and to a decision about future care needs being made which is contrary to the older person’s best interests. Professionals need to be aware of this and it is important not simply to accede to any request from a carer to “keep the peace” and avoid complaint.

In general terms though, just as with implementing the mental capacity act itself, these choppy waters are often navigated by negotiation and explanation. Often if professionals explore the reasons for a carer wanting someone to stay at home when not safe (or go into long term care that isn’t technically needed), if they explain what is and is not available, if they explore alternatives, confront some false beliefs, offer support etc, the right decision can generally be made without conflict.

On occasion however, things can become disputatious (e.g. family members point blank refusing to engage in the process of financial assessments for care, looking at care homes, or obstructing the delivery of equipment or access to social services). In such circumstances, the older person with dementia may suffer – e.g. by languishing in hospital for weeks whilst disputes are resolved, by being kept at home with suboptimal levels of care. Justice is also a consideration as such behaviour can consume resource and beds which could better be used elsewhere in the system.

In such circumstances, following the use of local mediation/case conferences/second opinions, things may become adversarial and it would be very useful at this point to have rapid recourse to independent arbitration with legal force.

Q27     In what circumstances might it be appropriate for health or social care professionals to make judgments about the best interests and needs of a couple (or of a household), instead of concentrating solely on the interests and needs of the individual?

A: Although there is a great deal of rhetoric about “person centred care” “client centred care” “choice” “the patient at the centre of service planning” etc, there is a risk that this is paper talk, with many services and boundaries between services (e.g. secondary, primary and social care) being governed as much by the priorities/regulatory frameworks/values of those organisations as the needs of the client. This often means that what would be best for a couple who are both infirm is not what is actually available. So social service packages are often arranged for one member of the couple, even though with some “blue sky” thinking we could make it possible to commission a package which met the needs of both simultaneously, perhaps with respite built in. A similar consideration is around the designation of care homes. The national census of BUPA care homes (BOWMAN et al Age Ageing 2004) showed that even for “conventional” residential and nursing homes, dementia is highly prevalent. We also know that increasingly residents in residential homes are dependent, frail and have nursing needs. In most cases, it could not be seen to be in the best interests of a long established couple to be separated and therefore we should surely have more flexibility about the designation of care homes so that wherever possible couples can stay together even if some care has to be “bought in”. We still have the nonsense in many parts of the country that the very mention of the “D word” (dementia) on a long term care assessment will put conventional (non EMI homes) off even though we know that many of their residents do have dementia. Inspection and regulation needs to recognise this reality.

Q28     From your experience, do you think that concerns about patient confidentiality result in family carers being given too little or too much information about the person they care for? How should a professional caregiver decide how much information to share with families?

A:  In general the recent emphasis (e.g. from the data protection act or from the health care commission or the Human Rights Act) on respecting the confidentiality of even the most vulnerable older people is to be welcomed. There has been an ageist and infantilising tendency to talk about older people behind their backs or over their heads or in earshot of others or to be careless in discussing confidential details of their medical history with others. However, it seems clear that there is a mismatch between what might sometimes seem exaggerated respect for confidentiality in the new orthodoxy about this and what the public expect. We should consider whether in some respects the pendulum has swung too far and respect for confidentiality may have become an overvalued idea. Certainly close relatives/involved carers of older people with dementia seem to have an expectation that information will be shared and even that they will proactively receive updates/information and be involved in care planning/discharge planning etc. It seems counterintuitive to many lay people especially from more collectivist/family oriented cultures that such information is denied to them. An interesting example of confidentiality as an overvalued idea is the HCC insistence that there be no patient name boards above beds in hospital and no boards in public areas of wards. In a 2005 BMJ paper, 300 older people and their families were interviewed about this and over 90% said they had no objection to the information being in public areas – clearly valuing safety and risk as more important than “privacy”. Arguably a similar over-compensation has happened with regard to research using routine data/care records which might be of benefit to adults with dementia but which no requires ethical scrutiny which might be a disincentive to research which might benefit that group.

Research

Q29     What should research into dementia be trying to achieve? On what basis should funding be allocated?

A: Research on dementia is currently grossly underfunded compared to research on other “sexier” areas of medicine. Dementia is just as common as many cancers for instance and just as debilitating for individuals and burdensome for the whole care system, but receives far less funding. In the wake of his article on ageism in Medicine (JRSM April 2008) Dr Oliver even received a personal communication from Prof Karel Sikora endorsing this view. But because dementia tends to affect older people, because dementia and frailty are subjects society generally wants to avoid thinking about and because specialities such as geriatric medicine and old age psychiatry have traditionally been seen as “low status” or “Cinderella” (despite geriatrics being the second most numerous hospital speciality at consultant level) dementia research has been historically underfunded.

Research should certainly focus on risk factors, prevention, genetics all with the aim of delaying onset, targeting interventions early etc. and it should also focus on memory enhancing drugs (which of course the pharmaceutical industry will then push – witness the furore over the NICE guidelines on Dementia). However there has been relative under-investment on research on non pharmacological interventions and on service delivery models to help older people with established dementia. Whilst NIHR Research for Patient Benefit aims to major on clinical research with tangible benefits, the jury is very much still out. The issue is that medical values/prestige hierarchies still tend to favour the high tech and cutting edge and curative (especially for younger patients)  over low tech, long term conditions and that peer reviewers tend to fund in their own image. Meanwhile Pharmaceutical Companies can fund drug trials. (The NICE guidelines on Dementia contained a raft of recommendations about other aspects of care but all the debate seems to have focussed on drugs). So health services and front end clinical research are still relatively neglected. A further issue is that the Research Assessment Exercise with its focus on large project grants and publications in “high impact” (therefore often basic science) journals has made it difficult for academic departments of geriatric medicine or old age psychiatry to survive let alone flourish – which has lessened research capacity in this area. For instance there are currently no  professorial departments of geriatrics in several major medical schools and none in London and other medical schools will appoint professors who have no background in the speciality because of their capability to secure large grant income streams. Perhaps the new “metrics” might alter this imbalance.

Q30     What is your view on involving people in research if they lack capacity to give consent themselves? Under what circumstances, if any, should such research be permitted? What safeguards would you choose and why?

Q31     Does the current legal position, together with the requirements for independent ethical review of research projects, prevent any research which you believe would be valuable? If so, could any changes in the regulatory framework be ethically justified?

(Both questions answered together)
A. Currently in clinical trials we have a problem. The patients recruited to those trials are often far from representative of the patients to whom the drugs/interventions will eventually be given (heart failure is an excellent example where the median onset is 75 years of age in patients with multiple pathology but patients in the trials have a median age of 60 and are often excluded if they have co-morbidity). Ipso fact it seems unethical to exclude from clinical trials the very group of patients who might benefit. There is relatively little data on interventions in patients with dementia (either for the dementia itself or for other co-morbidities) because they have tended to be systematically excluded from  trials, because research funding does not prioritise their needs  and local research ethics committees do not always have the sophistication to permit research on adults who lack capacity to consent. However, if there is equipoise (a question which requires an answer) and there are reasonable to steps to minimise harms to patients, we need to loosen the shackles rather than have reflexive suspicion of research on non consenting participants. Perhaps the Mental Capacity Act will help by providing a framework and clear protocols for assessing capacity to consent and protecting professionals.

Other issues
Q32     Are there any other ethical issues relating to dementia that we should consider?

A: Covered in replies above

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