Medicine, Health Care and Philosophy 4: 153–159, 2001.© 2001 Kluwer Academic Publishers. Printed in the Netherlands.

Autonomy, authenticity, or best interest: Everyday decision-making andpersons with dementia

Søren HolmInstitute of Medicine, Law and Bioethics, University of Manchester, Williamson Building, Manchester M13 9PT, UK (Phone: +44161 275 7014; Fax: +44 161 275 7704; E-mail: soren.holm@man.ac.uk)

Abstract. The question of when we have justification for overriding ordinary, everyday decisions of persons withdementia is considered. It is argued that no single criterion for competent decision-making is able to distinguishreliably between decisions we can legitimately override and decisions we cannot legitimately override.

Key words: advance directives, best interest, dementia, proxy decision-making

Introduction

It is commonly acknowledged that we all change overtime. I am not the person today that I was ten yearsago, and I will have changed again in ten years time.These changes are usually gradual and do not affectour perception of the person as one entity with anextended existence in space and time.

Some philosophers, most notably Derek Parfit,have taken a more radical approach and claimedthat personal continuity is really a matter of degree.They claim that personal continuity is a function ofthe degree of psychological connection with one’sprior selves, and that this psychological connectiondecreases as the time interval between two successiveselves becomes longer. At the limit, according tothis point of view, there may be no psychologicalconnection and, therefore, no personal continuitybetween two “instantiations” of the same spatio-temporal human entity (Parfit, 1984). There may beno connection between the entity called Søren Holm at20 years of age and at 50 years of age, and we shouldthen talk about two different persons inhabiting thesame body, or perhaps, if we take account of the bodilychanges, two persons living in two spatio-temporallycontinuous bodies.

A similar, but much more real situation is tragicallydisplayed each day in homes and nursing homes allover the world, where millions of elderly people withdementia live the last part of their life.1 The persons inquestion suffer loss of both long term and short termmemory causing gaps in their memory, and their senseof psychological continuity may be broken.

There are, however, crucial differences between thegradual psychological changes of a normal person andthe changes of a person with progressive dementia.

These differences are perhaps best brought outby using the (to philosophers) familiar picture ofNeurath’s boat.2 Whereas the normal person graduallyexchanges old planks in her boat of knowledge andpersonality for new ones while sailing on the sea oflife, the person with progressive dementia is steadilyloosing planks without any replacement. Initially theshape of the boat stays the same, but as time goes byit disintegrates into smaller and smaller pieces, eachfloating separately in a sea of lost memories.

Except in the very late stages of dementia suchpersons still have wishes and desires with a complexcognitive nature (i.e. not only desires to avoid pain,thirst, hungriness etc.). The purpose of this papershall be to analyse how we can assess these desiresand the choices made to fulfil them, and when wecan legitimately override them. The thorny questionsconcerning consent for dementia research fall outsideof the scope of the present paper.

In particular the paper will analyse decision-making concerning everyday situations where a personwith dementia expresses a certain desire, but wherecarers believe that the expressed desire should be over-ridden. In some instance abiding by the desires of aperson with dementia may also raise ethical problemsand need justification, but discussing the problemsraised by overriding desires brings the person’s statusas a decision maker into sharper focus, because wenormally assume that adult persons should have theirdecisions respected.

Even if a person has been found legally incom-petent to decide about health care matters, or placeof residence, this does not necessarily entail that thatperson is globally incompetent, and that all his or herdecisions can be overridden without further justifica-tion. Incompetence is, except in the most severe cases

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of dementia, patchy, and there may be large islands ofcompetence, even in persons deemed legally incom-petent for certain types of decisions. A person may beincompetent to decide about major surgery, but quitecompetent to decide whether or not to take an Aspirinfor a headache. Incompetence as an ethical category isthus not a feature primarily of certain kinds of persons,but of certain kinds of decisions.

One possible solution to the problem of everydaydecision-making for persons with dementia would beto apply a “best interest” standard, and allow onlythose desires to be acted upon that are deemed to bein the best interest of the person with dementia. Forreasons that will, hopefully become clear as the paperprogresses, a best interest standard applied by a careras the only standard of decision-making does, howevercreate more problems than it solves.

We may initially note that for a best interestapproach to be ethically unproblematic we would,however, have to either (1) assume a priori that theperson was incompetent to decide in the context inquestion, or (2) generate an account of “best interest”proxy decision-making that allowed us to invoke it notonly when a person makes incompetent decisions, butalso for certain classes of competent decisions (e.g.irrational decisions3). The first assumption is clearlyunwarranted as an a priori assumption in many cases.The second approach is more promising but requiresa fairly radical departure from the usual emphasis onrespect for autonomous decision-making in bioethicsand health law. We do not normally allow proxydecision-making in cases where the person in questionhas made a competent decision.

We usually take it for granted that we shouldrespect the autonomous decisions of individualpersons; and many would say that this is true, evenif we know that the choice made will have dele-terious consequences for the person in question. Ifshe has made an autonomous choice, and if she hasadequate information about the consequences, then weshould not interfere. The reasons given for this moralclaim range from the Kantian to the consequentialistside of the ethical spectrum, but it is accepted bymost standard accounts of biomedical ethics and healthlaw.

This paper will therefore primarily analyseapproaches to decision-making that attempt to putmore emphasis on the actual desires and choices ofthe person with dementia, and to find some criteriaapart from “best interest” that can distinguish betweendesires that can be overridden and desires that shouldbe respected. Although the analysis will show that thealternatives to “best interest” are preferable in somecircumstances, it will unfortunately also show that nosingle criterion, no single decision-making procedure

and no amount of rules will ever allow us to distinguishbetween competently and non-competently formeddesires and decisions in the large gray zone betweenthe obviously competent and the clearly incompetent.One fairly common situation will be used to provideillustrations for the various arguments considered here.It has been compiled from a number of Danish news-paper accounts over the years and its realistic nature isattested by the fact that some old people die in a similarway in Denmark every year:

Lars Hansen is a 79 year old male with severedementia. He has been in a nursing home for fouryears. Prior to this he was found several timeswalking the streets at night, not knowing where hewas or how to get home, and he also left the gas-cooker on, but not burning, on several occasions.His condition has steadily deteriorated, and he doesnot always recognise his daughter, who visits himat least once a week. His psyche has changed, andhe is often aggressive toward the staff.4 He refusesto take any form of medication, relating how hisfather died of mistreatment from doctors 65 yearsago. While in the nursing home, he has left severaltimes and has become lost, but has always beenfound by the police.5 Locking the door to his wardwould require the appointment of a legal guardianto sanction this, and because of the costs involved inthis process it is not done. It is also felt, that it wouldconstitute an undue infringement of the rights ofthe non-demented persons on Lars Hansen’s ward.However, one evening Lars Hansen walks out intoa blizzard only wearing his indoor clothes, and isfound dead two days later, lying behind a shed only400 meters from the nursing home.

Other similar scenarios where a person with dementiaperforms acts that are eventually harmful to him orherself could have been used, but this scenario willsuffice for the present purpose since it brings out thepertinent problems.

Analysing the desires and choices of persons withdementia

The desires of persons with dementia are similarto the desires of ordinary persons in many ways(strength, content etc.); but there are also differences.The same is true with regard to the decision makingprocesses leading from desire to choice and action.Three important differences are of concern:

1. the influence of memory loss on desire formationand rational choice,

2. the stability of the desires, and

EVERYDAY DECISION-MAKING AND PERSONS WITH DEMENTIA 155

3. the connection between the desires and choicesand the authentic personality of the person inquestion.

Each of these differences could possibly form thebasis for a criterion by which carers could distin-guish between desires and choices to be respected,and desires and choices that can be legitimately over-written. We will look at each of them in turn.

Memory loss, desires and rational choice

One of the defining features of dementia is the gradualloss of both long term and short term memory (Dunn etal., 2000). This loss influences the connection betweendesires and the objective state of the world.6 Becausethe person is not able to remember what has happenedpreviously, he is not able to respond appropriately inthe present, and not able to form appropriate desires.For example, if a person cannot remember whether ornot he has eaten recently, the mere fact that he passesthe dinner table, may prompt him to sit down and eat,irrespective of whether he has actually just eaten.7

The limited memory span may also influence theassessment of consequences because fewer factorscan be contemplated at the same time. Prior to LarsHansen’s going outside, he may well have heard theweather forecast predicting sub-zero temperatures, andmay well have seen the snow flakes melting on thewindow. But these facts were lost before the desirewas formed and played no part in its formation andcognitive assessment.

From one point of view this is only a difference indegree to what goes on when a non-demented personforms a desire. Certain salient features in the surround-ings prompt the creation of a proto-desire, rememberedfacts about the past and facts about the state of theworld are factored in, and a deliberated desire isformed. The only difference is in the number of factsthat are used in the calculation. And since we cannotmake rules as to the number of factors that must betaken into account for some desire to count as rational(e.g., if somebody is threatening me with a knife itcould be rational only to consider this single fact), wecannot a priori discount the desires of the demented.

What about qualitative differences? It could beclaimed that for something to count as a rationaldeliberated desire, it has to fulfill certain minimalrequirements. One possibility would be to say thatall salient facts known by the person should be takeninto account when forming a desire. But this will nothelp in the present context where we are talking aboutthings that the demented person has known (perhapsonly briefly) but now has forgotten. At the momentof decision the demented person may very well havefactored in everything he presently knows, but because

of gaps in this knowledge the decision may still havecatastrophic consequences.

Another, and perhaps more promising option, is tomove to a more normative conception of rationalityand claim that a desire is only rational if all factors thathave an important bearing on the future well-being ofthe person are taken into account.8 But this position isnearly identical to a best-interest view, although thisvariant of the best-interest view would give priority toa person’s own assessment of best-interest.

The stability of desires

It is also well known that many desires of persons withsevere dementia are not stable, in the sense that if theperson is diverted, even for a very short period of time,the desire recedes or disappears. In this regard personswith dementia resemble young children, and we dooften take the inconstant nature of a child’s desires tosignify either (a) that children are not fully rational, or(b) that their desires can be discounted more easily.

If Lars Hansen had met a nurse in the corridor,and she had persuaded him to go back to his roomand listen to the weather forecast, he might well haveforgotten his desire to go out, even before he reachedhis room. But this would probably be true of all of LarsHansen’s desires in his present state, and we may wellask how we can differentiate in a moral way betweendesires that should be reinforced and kept in his mindby external prompting (e.g., the desire to shave, or toeat with knife and fork) and desires from which heshould be diverted. A further complication here is thatthe caregivers have independent interests in supportingsome sorts of behaviours, and these interests maybe in conflict with both the objective and subjectiveinterests of the demented persons. A number of thedesires and choices regularly promoted in persons withdementia seem not primarily to be connected to theirbest interest, but to the interest of others, includingother patients in the same care facilities.

Instability of a desire is, clearly, neither a sufficientnor a necessary condition for discounting the desire,but it does seem to have some role to play as a negativefactor in our assessment of desires. Just how large arole it should play is difficult to assess, and our intu-itions on this point are complicated by the fact that it isdifficult to imagine a fully rational being without some“bedrock” of stable desires.

Desires and authentic choice

Another common answer to the problem of assessingdesires is that we should look for the connectionbetween a person’s present desires and his previous,stable, pre-dementia personality, and discount thosedesires that are not appropriately connected (Finnema

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et al., 2000; Cohen-Mansfield et. al., 2000; Jenkinsand Price, 1996). Only authentic desires, that isdesires springing from his real personality shouldmatter. But this answer has inherent problems inthose cases where a person was previously engaged indangerous pursuits. If the well-known polar explorerand adventurer Sir Ranulph Fienness (or Captain Oatesfor that matter, had he survived his previous excur-sion in adverse weather conditions) became dementedand wanted to go out into a blizzard, there wouldbe an excellent connection between this desire andhis previous stable personality; but would we not beequally justified in discounting this wish, as in the caseof Lars Hansen?

The problem is further compounded by the empir-ical observation that the mental state of persons withdementia is fluctuating. One day they may be ableto remember a lot and to be their “good old selves”,while the next they may be totally different. A desirewhich one day was unconnected to the previous stablepersonality, may the next be connected and vice versa.This points to an ambiguity in deciding whether some-thing is an authentic desire. Is a desire authentic simplybecause it fits the former personality, or must wein addition require that we can trace a connectionbetween the desire and the personality?

It seems insufficient to require only fit, and notconnection, because this would essentially mean thatdesires that coincidentally fitted the former person-ality, but had no psychological or first person narrativeconnection to it would count as authentic. If we requireboth fit and connection to count a desire as authentic,we do, however encounter the problem that whereas fitcan be detected with relative ease, connection is muchmore difficult to confirm or disconfirm. We wouldalso have to decide whether all types of psycholog-ical or narrative connection are equally valid basis forauthenticity. Is continuity of basic personality type andits expression in desires as good a basis for judgingthese desires to be authentic as more cognitive kindsof continuity?

These considerations point towards a conclusionthat even if we manage refine our account of authenticchoice in persons with dementia, we will still be leftwith practical problems in a broad range of cases whenwe try to apply our account in concrete decisions aboutwhether or not to override certain desires.

These lines of argument seem to lead to a conclu-sion contrary to the stated aim of the paper. Thisconclusion would be that what we are doing or maybeshould be doing, is using a pure “best interest”standard.9 We prevent actions based on desires thatare detrimental to the best interest of the person inquestion, and promote actions based on desires thatare beneficial. Accepting this as a rule will however

have the unfortunate side-effect that the range ofthe person’s liberty is restricted to those desires andchoices that are either beneficial to him, according tothe assessment of others, or inconsequential.10 Personswith dementia would thus be the only class of peoplewho would not be allowed to make foolish or reck-less decisions sometimes, and occasionally act on suchdecisions.

It has been claimed that if we follow the “bestinterest” standard we will be able to restore thedemented patient’s sense of self (Fellows, 1998), butit seems quite obvious that this will not always be thecase. Acting on the patient’s best interest will in certaincircumstances involve a conflict between our assess-ment of best interest and the patient’s assessment. Itmay also involve physical coercion and will in suchcircumstances be quite unlikely to add to the patient’ssense of self in any positive way (although it may addto the patient’s sense of being a powerless self). Finallyit is important to note that the promotion of actions ondesires we see as good and beneficial also constitutesinterference with the autonomy of the patient.

Advance directives and critical interests

In the preceding sections we have seen that carersface problems in deciding when to decide for personswith dementia, for instance concerning restrictionsof movement. Could the decisions be left to patientsthemselves – obviously prior to becoming incompetent– through some form of advance directive?

Recent scientific discoveries have made it clear thatAlzheimer’s disease, which is a major cause of earlyonset dementia, is genetically linked to specific sub-types of apo-lipoprotein E (apoE) (Strittmatter andRoses, 1995; Kamboh, 1995). At an early stage ofdementia it is therefore possible to perform apoE-typing and thereby predict the future course of thedisease with a reasonable degree of certainty. Indi-vidual patients may use this information to makeadvance decisions about what kind of living condi-tions and treatment they want, when their diseaseprogresses.11

This possibility does, however, lead into the muddywaters of the validity of Ulysses-contracts. To whatextent can I now bind my future selves to observecertain conditions or perform certain acts, with theknowledge that these future selves would probablychoose to do something different? It seems reason-able to say that I can only bind myself in this way,as long as I really am myself and not somebody else.But this is exactly what is at stake in the case ofthe severely demented person. If we do not positsome “deep further fact” which makes the person with

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dementia the same as his non-demented predecessor,but only look at psychological continuity, there may beno continuity; and there may, therefore, on a Parfitiananalysis, be two distinct persons.

It does, however, seem strange if our relations todemented persons should be governed solely by thispiece of sophisticated philosophical reasoning aboutthe ontological status of persons. Real persons areembedded in social networks and occupy social roles.My maternal grandfather kept on being my maternalgrandfather, even at a time when his dementia haddeveloped so far that he could no longer recogniseme as his grandson. It is through these social struc-tures that normal contracts and promises are medi-ated, reconfirmed, and reinforced, including normalUlysses-contracts like “I will not smoke anymore”.That a person has decided that he would wanthis movements restricted when he becomes severelydemented may not provide us with a complete moraljustification for restricting his movements when thedementia actually occurs, but it will add to our justi-fication nevertheless. In his book “Life’s Dominion”Ronald Dworkin argues that we would not only bejustified in following the previous wishes of a nowdemented person, but that we would be obligated to doso in certain circumstances (Dworkin, 1993). The basisfor this conclusion is Dworkin’s distinction betweenexperiential and critical interests. He defines criticalinterests in the following way:

But most people think that they also have whatI shall call critical interests: interests that it doesmake their life genuinely better to satisfy, intereststhey would be mistaken, and genuinely worse off,if they did not recognize. Convictions about whathelps to make a life good on the whole are convic-tions about those more important interests. Theyrepresent critical judgements rather than just experi-ential preferences. (Dworkin, 1993, pp. 201–202)

Dworkin further argues that while severelydemented persons may still have experiential interests,they cannot have or, perhaps more precisely, cannotform critical interests. The critical interests theyformed while they were still competent therefore carryover to their demented state, and other moral agentsare morally committed to act on those critical interests.This entails that if somebody has developed a criticalinterest in not living a life with dementia and depend-ence on others, and has stated, while competent, thatshe would rather die, then her carers are morally obli-gated to follow this interest in their decisions on behalfof the person with dementia, and disregard all herexperiential interests.

Dworkin’s distinction between experiential andcritical interests is important, but I do not think that

it supports his conclusion in this case. The crucialmove in his argument is not positing the distinction,but claiming that a person’s prior established criticalinterests extend to all later parts of that person’s lifewhere the person is not competent to form criticalinterests. This move is unconvincing for two distinctreasons. Firstly it seems equally plausible to claim thatthe critical interests just disappear in such a situation.Secondly an extension of a critical interest cannot bebased merely on its critical nature, but must be basedon the reason why the person holds this to be a criticalinterest. Dworkin makes it quite explicit that we mayeach have different critical interests. We can, therefore,imagine two persons expressing a critical interest innot living on as demented, but giving two distinct justi-fications for this interest. Let us, for instance, say thatone of the persons claimed that a life with dementiaand dependence on others was contrary to her concep-tion of human dignity. The other claimed that a lifewith dementia was intolerable because only a life withthe ability to read (and understand) Joyce and Proustwas acceptable, as reading these authors was the onlytrue joy of human life. We would have good reasonsfor saying that only one of these critical interests couldconceivably extend to the demented state. If the personin the demented state was happily occupied watching“Wheel of Fortune” on the television, and expressedno further interest in Joyce, Proust or even BarbaraCartland, it becomes very difficult to explain why theprevious interest, despite its critical nature at the timewhen it was formed, should now guide the decisionsof the carers. Founding the whole appreciation ofone’s life on a very narrow range of activities seemsto be a very tenuous support for a binding Ulyssescontract. An analysis of a demented person’s previ-ously stated critical interests may therefore help usin making decisions for and about that person, butit will never give us the answer by simple deduction(Dresser, 1995). We will always need to know notonly what critical interests the patient had formed,but also what the reasons for forming these interestswere. An assessment of the importance of a given setof critical interests must also take account of the factmentioned above that the persons with dementia aredeeply embedded in family and other social structures.

Conclusion

As we have seen above there is no simple solution toquestions about when it is legitimate to act to protectthe elderly with dementia from their own decisions.In this sense the conclusions of this paper are mainlynegative. Decisional competence is not all or nothing,but is spread out along a wide continuum. No single

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criterion can reliably distinguish between competentlyand non-competently formed desires and decisions.Either the criterion disqualifies many decisions madeby persons without dementia, and opens up the possi-bility of widespread legitimisation of coercive prac-tices, or it allows decisions as competently madethat are rather obviously incompetently made. Thiscontinuum of competence without clear cut-off pointscomes into play when we consider whether to interferewith harmful (or potentially harmful) acts covering awide spectrum of magnitude of harm. On this axisof harmfulness there is also no clear criterion forlegitimate intervention. There is thus uncertainty anduncertain cut-off points on both the competence andthe harm axis.

In the end the conclusion must therefore be that noamount of rules will ever be able to relieve the caregiver of his or her obligation to personally assess thedesires and decisions of demented and possibly incom-petent patients and ethically choose which to respectand which to counteract. A careful analysis and inter-pretation of the patient’s history and the backgroundinterests on which the patient bases his or her decisionsmay facilitate that assessment, but it will very seldomsuffice to reach the final choice.

Notes

1. It is estimated that some degree of dementia afflicts 10–15 percent of persons over the age of 65 (Hasan and Baker,1993; Fratiglioni et al., 1999). Dementia occurs in all popu-lations but the social response to the condition varies widely(Ineichen, 2000; Olson, 1999).

2. The famous Austrian philosopher Otto Neurath (1882–1945) held a coherentist epistemology and compared thescientific enterprise to a boat continuously sailing on theopen sea. We, the sailors of the boat, must continuouslyrebuild the ship, changing a plank here and there, withoutever being able to put it in dry-dock and reconstruct it fromscratch.

3. See for instance Culver and Gert (1990). It is, however,questionable whether a truly irrational decision can ever becompetent.

4. Restlessness and aggression are highly prevalent concom-itant behavioural symptoms to dementia (Ballard et al.,1999).

5. Wandering is very common in dementia, see Algase, 1999.6. I will not be drawn into a discussion of whether such an

objective state of the world can be described or even exists.7. Eating disorders are fairly common in demented persons. In

mild dementia there is often over-eating, whereas refusal toeat is more common in severe dementia, see Watson, 1993.

8. Maintaining the usual provisos concerning the cost of infor-mation seeking and the possibility of getting information.

9. This does not imply that we have to discount all knowledgeof a person’s past. It may be in the best interest of somebody

to eat pork, if it is the only available source of high qualityprotein, but if the person in question has always been amuslim, we are justified in taking this fact into account inassessing whether it would be in his best interest.

10. We could set an arbitrary cut-off point, so that action ondesires leading to minimal harm was tolerated. This is acomplication I will bypass here.

11. The issues concerning pre-symptomatic and early screeningfor Alzheimer disease are both scientifically and ethicallyvery complicated and far beyond the scope of this paper.The reader is referred to Post and Whitehouse (1998) for afull discussion.

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