Friday, 20 April 2012


Co-morbidity. Dementia is largely a condition of older people and significant co-morbidity exists.Co-morbid conditions include heart disease, Parkinson’s disease or different formsof cancer, any of which make the task of supporting the person with dementia moredifficult. In particular, difficulties arise which are compounded when supporting aperson with dementia to eat or drink if the person has other pre-existing healthproblems or develops other illnesses. Some diseases interact more with dementiathan others, especially if there is a nutritional aspect to the disease. As such,diabetes was commonly reported as a co-morbid condition where problems arose indementia and this may be due to a link between the two conditions. There wereseveral reasons for this including over-eating, a preference for sweet foods andunder-eating all of which made the maintenance of blood sugar levels problematic.There were no significant 'tips' in this regard but this is an area where professionaladvice is much needed from doctors, dietitians and specialist nurses, not particularlyto carers who displayed accurate and well-informed knowledge in their responses,but to staff including hospital nurses, day care and residential staff.One daughter reported:My mother spent some time in hospital after a stroke. She had already beensuffering with dementia. Despite the CPN and myself explaining her needs,Mum was often given food difficult for her to eat.A group of carers who were supporting a person with dementia who had diabetes,observed that the co-morbidity was adversely affected in several ways especiallywhen the person with dementia developed a sweet tooth. Carers reported, forexample, that it was difficult to persuade people that they cannot eat what others areeating, especially in formal care settings. Others found the problems to be moregeneral:My father has diabetes as well as multi-infarct dementia, therefore it isessential that he eats appropriate food at specific times.Combinations of physical health problems with dementia seemed not always to beunderstood by staff and this troubled carers:(my father) has been given chips and fatty food despite me explaining he hasno gallbladder. There are too many different staff on to ensure they know.In addition to physical health problems, if the person appeared to have depressionthis sometimes seemed to magnify problems with eating, such as lack of motivation,having a limited appetite or lack of enjoyment of food.Social issuesA striking feature of the data and one which some family carers were keen to report,was how it was possible to eat out with their relative with dementia. Theexperiences were not universally positive. However, finding the right restaurant wasimportant and making some special provision for the person with dementia such asan isolated table or one near the toilet was reported as possibly helpful to others.Keeping the environment quiet, at home especially, seemed to contribute as thisminimised distraction for the person with dementia. The issue of dignity: for theperson with dementia, the carer and other diners was raised. Generally, thosecarers who had decided not to worry what others thought were able to continueeating out. Others gave up at a very early stage. This is an area which could beexplored further as there was also a commonly reported concept that eating out,eating with others and keeping up some routine in socialising eating were positivefactors which encouraged the person with dementia to eat.The data provide many examples of helping people to eat in a social context. Whilemany carers provide support at home, there were examples of families continuing toenjoy going out. One daughter described this as a matter of her caring routine:I work full time but visit mum straight from work on a Tuesday and Thursdaynight and from lunch on Saturday. We always go out for a drink in apub/restaurant, shopping, visiting friends or for a ride in the car before goingout for a meal in the evening. Mum can’t make a decision about what tochoose from the menu, sometimes she will order a meal and then when itcomes she’ll say ‘I’ll never eat all that, why did you let me order it?’ Mosttimes I order for her and she eats what she can and enjoys it.Some carers reported that they found some people and places more welcomingthan others. For example, one wife commented:Where they knew him eating out was OK, but where they didn’t I feltunwelcome.Another wife found that her husband had not always been welcome:When out in a restaurant my husband would order a meal for his friend aswell, who was not there. Some restaurants would understand, but a lot wouldtreat him bad.One common thread was whether carers felt that the behaviour of the person withdementia in a public setting was manageable or embarrassing. As an example ofbehaviour that seemed a little inappropriate to the family but did not interfere toomuch with their enjoyment one daughter reported:She (my mother) eats very well when taken out for a meal but if the food isportable, such as chicken pieces or steak, she wants to wrap it up and take ithome.Other carers reported that in their experience the benefits of going out for a mealbecame outweighed by the proble ms. For example, one daughter admitted:I cannot relax enough to make it worthwhile eating out with my mother.Another carer acknowledged, as did others, that it was the family’s feelings thatwere affected:When we took (my husband) out for meals I think it upsets my family and memore than it upsets him as he makes a mess sometimes.Weight change, food supplements, dehydration and eliminationWeight change - increase and loss of weight - was frequently reported. Weight gainwas related to over-eating due apparently to forgetting that a meal had been eatenand also to a constant search for food. Some carers handled this by providingadditional meals and snacks but it was also reported that food had to be hidden andlocked away. Eventual loss of weight was one of the most commonly reportedproblems and negative aspects of dementia and this was often related to careprovision, which forms a theme below. Many carers sought explanations for weightloss as this daughter reported:When my mother first had Alzheimer’s we noticed a severe loss of weight.She normally weighed between 9.5 and 10 stone. She went down to 6.5stone. Our GP was not alarmed and didn’t seem to want to explain.Many of the 'tips' which we report separately are concerned with helping people withdementia to eat and this includes the use of food supplements which are, generally,favourably mentioned. The source of such supplements is not always reported butmany brand names are mentioned. The supplements are either fortified drinks orpowders which can be added to whatever food the person with dementia will eat.Only a few carers reported contact with a dietitian: food supplements had eitherbeen prescribed by a GP, or carers purchased them themselves. Someresidential/nursing homes also provided them. For those providing support to aperson who could not longer eat or who were thought to have insufficient nutrition,food supplements provided some assistance. As one person indicated, they werecommonly used in residential or nursing home care:In the nursing home my mother was given only ‘Build up’ liquid food whichshe drank when I was present to help her. When the nurses said she couldeat no solids I found she was able to eat bananas and seedless grapes ifcarefully administered.Carers also reported a variety of ways in which they tried to make such supplementsas pleasant as possible for the person with dementia. Some had not found it easy toget the level of help they thought they needed with such products:After pleading with the GP I managed to get him to prescribe Ensure Pluswhich I used plain and heated with chocolate.Reduced eating was also associated with reduced drinking and this appearedespecially distressing for family carers as the person with dementia rapidly becamedehydrated. This was a notable problem in institutional care, particularly in hospitaland many negative experiences were reported. The solutions to under-eating anddrinking were quite simple: small frequent portions and gentle encouragement andreminding to eat and drink. Such care appeared to be poorly addressed in hospitalsdespite advice and enquiry by carers about preferences and strategies to encouragefood and fluid intake. Many carers reported vigilance was necessary to monitor thecare of people with dementia in hospital. Problems with drinking were mentioned ina number of replies. Many carers felt that their relative did not receive sufficientfluid, especially water, in formal care settings. There were a number of reports offamily members trying to make sure that people were given sufficient drinks, andthat when drinks were supplied the person with dementia could manage to hold thecup or straw, or that it was within reach or at the right temperature. Hospital wardswere singled out as places where family members felt that such help with drinkingwas inadequate. One wife reported:I feel that not enough liquids seem to be given in hospitals/nursing homes.(My husband) was used to drinking many pints of water/squash and a coupleof weak beers a day but they only seem to give tea at meal times. He wasn’tup to finding drinks of water by himself. I used to take him in cans of softdrinks.Closely related to the issue of drinking was elimination. There were reports ofconstipation and urinary tract infections associated with poor diets and low fluidintake. Often, these had been resolved when the person moved to a home orreturned home and a better pattern of eating and drinking was established. A groupof carers drew atte ntion to the links between eating and drinking and their relatives’problems with going to the toilet. Many thought that the person with dementia didnot drink enough, particularly in the evening, to avoid visiting the toilet. Others feltthat drinking was not encouraged by care staff to avoid problems with continence orbecause staff lacked knowledge about the benefits of drinking. For example:When my late wife, who was believed to have Lewy Body Dementia, was inresidential care, she developed a problem with drinking fluids. At one stageshe became dehydrated and required urgent hospital treatment. I have longsuspected that this could have arisen as a result of a lack of training in staff.They were notably kind but it is obvious that these qualities are not enough.Some noted that their support of their relative included help with continence andlinked this to their supervision over what their relative was eating or drinking. This,too, added to carers’ work as one daughter illustrated:Mum suffers constipation quite often but can also go the opposite and get ina mess.Mouth problemsMouth problems were attributed in some instances to poor fluid intake and as noted,this was connected by many carers to poor quality care. For some they wereresolved by better fluid intake. However, problems with dentures were also seen togive rise to mouth problems and a range of other difficulties. Carers described how,in people with dementia who were losing weight, their relatives’ dentures became illfitting leading to a sore mouth or dispensing with the use of dentures altogether.Where carers had been able to maintain the use of dentures it was reported bysome that these were either lost in hospital, not cleaned properly or simply left bythe bed. Where community dentists visited people at home this was warmlywelcomed. However, some people with dementia became very reluctant to permitothers, including dentists, to remove dentures or carry out oral procedures. Othercarers noted that it was difficult to persuade their relatives to clean their teeth andthey had devised various ways, either on their own or with the support of others, tohelp maintain oral hygiene. One wife recalled:….there were great difficulties with my husband’s gums – bleeding andinflamed. I found an excellent dentist who very patiently and sensitivelycleared up the problem and saw him every 2 or 3 weeks to clean his teeth ashe was no longer able to do this properly himself, he wouldn’t let me help,saying ‘I’m a man, I can do this myself!’.Those care providers who seemed to appreciate the importance of teeth anddentures both for eating but also for comfort and dignity were appreciated. Onedaughter reported:The Home was very helpful in getting mum new dentures. She had flushedhers down the toilet when she coughed.However, such care was not always forthcoming:In the residential home my mother is in, the staff appear not to recognise aproblem until it is pointed out to them, i.e. my mother not cleaning her teeth,she got a fungal infection in her gums.Food beliefs, preferences and changes in tasteFood beliefs, preferences and changes in taste are related because food beliefsmay dictate preferences. However, it was frequently reported that some individualswith dementia had undergone profound changes in food preference. Thesechanges in preference challenged the notions of the carers about such issues as'healthy eating' and social norms regarding 'three square meals' and the overt use ofconvenience foods.Accounts from carers in this study confirm that many people with dementia developa sweet tooth, but they also provide evidence that some people begin to eat ordrink things that they would not have done previously. Equally, sweets, chocolateand biscuits were commonly reported as items which people increasingly enjoyed,at times in great quantity. For some carers it was a relief that the person they weresupporting would at least eat something. For example, one daughter reported:Chocolate has been a big favourite – this seems to keep her going on a noneatingday.Other carers said that they felt it necessary to keep an eye on what was beingbought. One daughter recalled finding numerous sweet items secreted away by herfather:He could still go to the local shops to buy sweets and biscuits which he hid inhis bedroom.Others found that their relative might eat sweet items non stop and so theyrestricted what was available or on view:I have to limit the number of biscuits she has to two when we have ourmorning drink otherwise she will eat the whole packet.However, not everyone preferred sweet things, as one husband reported:Before Alzheimer’s drank no milk in tea or coffee etc. and only used dryskimmed milk in cooking. She has gone off sweet things.Other carers also noted their relatives’ changed preferences:My husband who was diagnosed with Alzheimer’s Disease has changed hiseating habits. He now drinks coffee several times a day – before his illnesshe drank only tea. He now dislikes cold meats – previously he often atethem.Such changes need also to be put in the context of people’s food habits and beliefsabout diet, nutrition and cultural practices. A small number of carers reportedfirmly held beliefs about what a good diet meant to them and how they wanted tomaintain this:My husband’s diagnosis was only 7 months ago and therefore we havecontinued with our usual diet which is high fibre, including fresh fruit andvegetables, poultry, fish and very little red meat, together with a one day acesupplement.Other carers felt concerned that their relative with dementia, or themselves, werenot having ‘proper meals’. For some this seemed linked with long-standing foodhabits and new ways of shopping, cooking or new types of food could cause someanxiety. One daughter reported:I am concerned at the amount of processed food my father eats but I do notwant to restrict his liberty while he is still capable of shopping and cooking forhimself.Other carers reported great adaptability and indicate that they had tried numerous ofpresenting food and drink to make eating more pleasurable, to maintain a person’sindependence and to tempt those with limited appetites.Care provision and transitions in careIt was overwhelmingly the case that carers reported general hospital care of peoplewith dementia very negatively. Lack of staff, lack of time and poor attitudes andtraining were all cited. There is evidence that specialist units and homes (nursingand social work) provided better care and this was noticed through transitions incare. A typical pattern would be admission to hospital due to some emergency,sometimes associated with not eating or being dehydrated, where the condition ofthe person with dementia would deteriorate. The episode would highlight the needfor a longer term solution to the care of the person with dementia and, once in ahome, their general care and nutrition would improve. We wish to highlight the careof people with dementia in hospital as an area of major concern and one thaturgently needs to be addressed.Regardless of the type of setting, however, essentially, the provision andpresentation of food was seen as a barometer of care. Some carers felt that theirrelative was not treated well in formal care settings. This applied to lack of careover food intake but also more generally. For example, concern was expressedabout people being left in dirty clothes with food spillages down them. When arelative has always taken a pride in their appearance, to see them in food-stainedclothes can be upsetting as one carer illustrated:In the residential home staff did not change clothing when she had drippedfood down herself which caused us distress as, before advanced dementiashe had been most meticulous about her clothing.Experiences differed and there were examples of good and poor care from allsettings, locations and services. One common theme identified was that ofresidential home staff being over-stretched and under-trained. As one carerreported from her experience:Homes very tremendously. Some have highly skilled staff; however, manylack basic training and seem unable to treat the resident as an adult. Thiscan be most obvious at mealtimes when staff seem incapable of assisting ina non-intrusive way allowing maximum independence and dignity.Generally, carers did not see problems as deliberate neglect but wereunderstanding of pressures:As with everything in Alzheimer’s what is really required is time, patience andempathy, sometimes easier said than done.Those carers who had found high quality care considered themselves veryfortunate. Many seemed to feel that taking trouble with food and drink indicated agood caring environment:I am very pleased with the residential home in which my mother lives, thefood is always well presented, cooked expertly and smells appetising.Carers’ accounts provide evidence that some services are inadequate, in somecases unacceptable. Others, which might have been helpful early on, do not alwaysrespond to the changing needs of the person with dementia. For example, whilemeals on wheels services could be helpful, many of those carers whose relative hadreceived them for a while reported that their relative no longer benefited from theseif meals were simply delivered and left:Meals on wheels were of very little help. They were delivered early(11.30am) when she was not hungry. She would put the meal in the fridge(whilst still hot) saying she would eat it late. She would then forget about it.In a very few instances, help with delivered meals was provided and this seemedeffective. In other cases, help was provided with preparing food and then eating itand this was seen to maintain independence and to provide valuable company atmeal times.The most trenchant criticisms, however, were made about hospital staff. Staff weresaid by many carers to take no account of the person with dementia’s needs. Forexample:When admitted to the hospital very little notice of what my husband ate ordrank was taken by the staff. No suitable diet was produced. He was unableto swallow and was given a disgusting concoction of what other patients weregiven but put together in a blender which he was quite unable to eat…Foodand medication were just left on his locker.Relatives reported their frustrations at telling staff about the effects of dementia andseeing this ignored:On one occasion we visited my mother in hospital, her lips were swollen andblistered because she had drunk something too hot. We did tell the hospitalnot to give her hot drinks unless supervised, which seemed to have beenignored.Many commented critically on the routines within the hospital ward when food wasdelivered and the person with dementia was overlooked:Hospital staff could not cope with her (my mother’s) confusion, food wasplaced in front of her and left.Carers repeatedly expressed great anxiety at times about leaving their relative inhospital:In a general hospital where my father had to go for a broken wrist he wasconstantly given good care but no assistance was given to him to help himeat…. Sometimes I was told he was not hungry – but unless you fed myfather he would not eat. It was all rather worrying.Some carers reported frequently going into hospital to ensure that their relative wasbeing looked after. For example, one wife said:Unfortunately he has now had a stroke and has problems with chewing andswallowing so things will be more difficult when he is eventually dischargedfrom hospital…At present I go in at one of the meal times daily in the hospitalto help the staff by feeding my husband myself.RiskCarers reported managing risk as a major concern. Danger to the person withdementia was evident in a number of ways, which ranged from the storage andconsumption of out of date food, inappropriate storage of food and problems withcooking. It was evident that many older people with dementia became unsafe ifunsupervised, in the kitchen due to practices such as using gas or electricity atmaximum settings, forgetting that things had been left on the stove and puttingelectrical appliances such as kettle on the stove to heat. Supervision in thepreparation of food or involvement in the preparation of food often helped but forthose people living alone the disconnection of the relevant gas and electricalappliances and the organisation of alternative meal provision, sometime usingmeals on wheels, provided a solution. Some carers reported that the microwaveoven was a 'godsend' in such situations. Very few reported professional help inadvise about assistive technology.Some carers reported anxiety over their relative’s behaviour around eating. In asmall number of instances people with dementia placed themselves in danger byeating non-edible substances:My brother bought unsuitable food if he went out alone – he tried to eat thelittle squares for cleaning the sink.Other relatives reported that some symptoms of dementia were difficult to manage ifthey occurred at unpredictable or difficult times:Mum became restless and confused at night and would get up, stating shewas hungry…. I could not leave her up and about at night – she insisted oncooking chips!Many carers tried to balance their relative’s independence with keeping an eye opento risks in the home, particularly the kitchen:Mum uses a toaster and is safe doing this and I think it is also very good thatshe does this for herself.A small number reported that a person with dementia might be at risk over alcohol,but most appeared not to want to restrict this pleasure entirely:She (my mother) was drinking too much sherry – partly because she was depressed, partly because she forgot how much she had had – occasionally she was drunk.