WEIGHT LOSS In ADVANCED DEMENTIA - Western Sydney

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WEIGHT LOSSin ADVANCEDDEMENTIAInformation for family membersThere are many reasons why a person withadvanced dementia might loss weight.This booklet discusses those reasons.c Decision-making frameworks in advanced dementia: Links to improved care project.

Understanding weight loss inadvanced dementiaStudies have shown that once dementia reachesits final stages, one in every two or three affectedpeople will experience severe weight loss. Weightloss may occur despite the person with advanceddementia being given all the food they want.Weight loss may be part of the process of dyingfrom dementia.Watching someone with advanced dementia loseweight, despite being fed enough food, can befrightening. It is quite normal to feel this way.Staff in this facility will talk to you about anyweight loss issues your family member/friend isfacing and support you as you make decisionsrelating to their care.How do we monitor weight loss?Staff monitor weight loss by regularly weighingevery person with advanced dementia. If they arelosing weight or having problems eating, staffmonitor them every week while the problemspersist.

Sometimes we stop weighing residents withadvanced dementia, even though we know theyare losing weight. Weighing will disturb themand our main goal is to keep them as comfortableas possible. We only stop weighing residents afterthe family members, general practitioner andfacility staff have talked it over and all agree thatit is no longer appropriate.What changes in weight do welook out for?We particularly watch out for anyone who has: a 5 per cent weight loss in one month. Forexample, a person who weighs 50kg andloses 2.5kg in one month will be monitoredcarefully; less appetite than usual. Everyone’s appetitecan change up or down. Starting a newmedication or being ill can change yourappetite for a short time. If a poor appetitecontinues, we need to consider the cause; a slow decrease in the amount of body fat, sothey are underweight for their height, and unexpected weight loss for three consecutivemonths. Weight, like appetite, can changeup and down without there being a problem.Unexpected weight loss that continues forthree months needs to be investigated further.

Common reasons for weight lossNot eating enough foodIn this case, staff look at the food given to theperson to see whether it needs to be changed. Theperson might not like the food or it could be thewrong consistency and they are having troubleswallowing it. They might need a larger serve.If necessary, we refer the person to a dietitian orspeech pathologist.The person might not be eating enough becausethey have got bad teeth, badly fitting dentures ormouth ulcers. They may need to see a dentist orhave their daily mouth care changed so they aremore comfortable.We also consider how much help each personneeds to eat a meal and, if necessary, give themmore help.

Medical problems that cause weightlossSome conditions can be managed so weight lossslows down or stops, such as: depression;constipation;pain;some medications;thyroid disease;chronic infections;special diets such as low cholesterol diets, andnot drinking enough fluids.Sometimes blood tests, X-rays or other medicaltests are needed to confirm these conditions.Invasive tests, such as taking blood, may disturb aperson with advanced dementia.It is important to consider whether knowing thetest result is more important than disturbing theperson.You may decide that you no longer want yourloved one to have any more invasive tests, such asblood tests. Staff will support whatever decisionyou make. For many frail people with advanceddementia, this may be the most appropriatechoice.

When weight loss continuesWeight loss may continue even though thecommon reasons for weight loss have beenmanaged. The weight loss can be inevitable dueto advanced disease called cachexia (ka/kek/sia).Cachexia is a normal process caused by advanceddiseases such as dementia, cancer, heart, liver,kidney and lung failure.When people have cachexia, they can’t absorb thenutrients from food, even when they are eatingand drinking enough. They lose weight, haveno appetite, and become tired and weak. Theperson’s body slows down and prepares for death.What can be done about continuedweight loss?When cachexia is present, the best choice is tocarefully feed the person using food he/she likesand can swallow. This way the person can stillenjoy the social contact that comes from beingfed. Tastes and smells from favourite foods canstimulate the appetite. Family members andfriends can help feed the person if they want tohelp.A person with cachexia should never be forced toeat.

Artificial feedingSometimes feeding tubes are considered. Thesetubes are inserted directly into the stomach toartificially feed a person who has trouble eatingor swallowing.Feeding tubes stop the person from enjoyingthe social contact of being fed and the taste offoods they like. Feeding tubes are not normallyrecommended for people with advanceddementia.Feeding tubes are uncomfortable and may causeinfections or bleeding where they are inserted.Research shows that being fed through a feedingtube does not help a person live longer than ifthey were carefully fed their favourite foods.If artificial feeding via a tube commences, it mayneed to be stopped as vomiting or breathlessnessfrom having extra fluid in the body might makedying more uncomfortable.The decision to stop tube feeding is sometimesharder to make than the decision to start it.

Making decisions is hardFood is a very important part of our lives. Wecook food for others to show our love for them.We eat special food at celebrations such asbirthdays and weddings. We enjoy social contactas we share food.Having to make decisions about feeding andweight loss is hard. When a person has advanceddementia and can’t tell us what they want, it’seven harder.Think about what your family member/friendwould want and base your decisions on that.Talk to the nurses and other staff in this facilityand the general practitioner, who all know yourloved one well. They all want your loved one tobe comfortable and honoured.If you remain very worried, consider speaking toyour spiritual advisor or a close friend about theissues to gain extra support.SWP

Weight loss may be part of the process of dying from dementia. Watching someone with advanced dementia lose weight, despite being fed enough food, can be frightening. It is quite normal to feel this way. Staff in this facility will talk to you about any weight loss issues your family member/friend is facing and support you as you make decisions

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