Friday, 20 April 2012


Many carers reported that their relative with dementia had died and had lost significant weight in the process. However, while the end of life must be an issue for many, very few reported it. As previously mentioned, professional carers were more concerned with the ethical aspects of feeding or withdrawing food. We highlight this as an issue which is conspicuous by its absence and this may indicate a lack ofdiscussion between professionals, who appear to be concerned and relatives,who may not have the opportunity to discuss this.Carers’ feelings about eating and drinking at their relative’s end of life were mixed. Strong views were held by some about staff ‘interfering’ with a person who wasdying. For example:My father, when dying, was frequently disturbed to be given food, which I felthe didn’t want.Other carers reported that they wished more had been done:…my father (with cancer of the colon was) put in a single bed ward where, although food and drink were placed before him little attempt was made tosee it was consumed. He wasted over some 3 weeks and finally died.Very few carers reported medical intervention through tube-feeding (which isuncommon with people with dementia in the UK), most saw their role and that ofstaff was to maintain comfort such as giving sips of water. When this seemed to belacking in some settings, again hospitals were most frequently criticised; carerswere saddened if death had not been easy, comfortable or dignified.TipsAs this research also shows, carers develop skills in problem solving. These areuseful for other carers to learn but also for paid staff. Problem solving seemed torelate to a confidence to try different ways of doing things. Most carers say theydevelop this through trial and error – very few were able to report constructive helpfrom support services in managing difficulties at home. For some this ability toproblem solve successfully seemed to be linked to their knowledge of their relative’s particular problems and a sense that helping with eating and drinking were important. One daughter’s experience illustrated this: I have to be careful not to serve her (my mother) first because if I do she will push the plate away and give it to me or my husband because she thinks we haven’t anything to eat. She will insist we have hers – she went without during the war in order to feed us. If I serve her last this doesn’t happen.For others, making life easier generally was a way in which carers continued tocare. Getting more help in the kitchen or with shopping, or using convenience food,were strategies that some carers used to reduce stress or work: For example: I have recently bought a microwave oven with the idea of re-heating the occasional frozen meal if I did not feel like cooking. Other carers reported that a positive attitude helped them in the task of caring and in managing unfamiliar tasks: For most of our married life I never had to worry about where my next meal was coming from; now I have to do it all myself, by following the instructions on the packet, but she has never refused what I’ve given her so I can’t be too bad! This terrible experience has, if anything, brought us closer together. Others said that they managed through having a sense of humour: A very time consuming business being a sole carer, but we have our laughs as well!These accounts also highlight that while much work involved in supporting a personto eat and drink may be seen as personal care, or even nursing tasks, otherelements involve tasks such as co-ordinating services or keeping an eye on things.For example, one friend reported: A hot meal and sandwiches/cake are delivered daily. Originally my friend paid daily for the meals but then cancelled the service without informing me. The service is now paid for by cheque (by myself as attorney) a month in advance.Specific tips included:?? the use of finger foods, different sized plates (some reported using small platesto convince the person with dementia that they were getting large enoughportions and other reported using larger plates for the opposite reason)?? laying the table using non-patterned tablecloths in order that the person withdementia would not become confused between food on a plate and the patterns on the tablecloth?? presenting the person with dementia with only one type of food at a time?? eating in a quiet atmosphere.These suggestions are included in professional literature and self-help material.What is interesting here is the variety of approaches and the need to try different,even opposite, strategies.