Table of Contents. List of Figures

Transcription

1

2 Table of Contents Introduction 6 Admission procedures 6 Monitoring loss 9 Standard Practice 10 The framework 1: assess for unintentional loss and trail 1 st line 12 interventions The framework 2: if loss continues, assess and trail 2 nd line 17 interventions The framework 3: if loss continues, assess and trail 3 rd line 23 interventions The framework 4: if loss continues, assess and trail 4 th line 25 interventions The framework 5: if loss continues, consider whether the causes 28 of loss are irreversible Procedures 1: weighing a resident 30 Procedures 2: measuring the height of a resident unable to stand 30 Procedures 3: calculating BMI 31 Procedures 4: what to discuss at the first family conference 31 Procedures 5: increasing the energy content of food 32 Procedures 6: fluid requirements and increasing fluid intake 32 Procedures 7: dysphagia: what care staff should look for and report 33 References 34 Weight & BMI monitoring chart 35 Food & fluid intake chart 36 Ed-FED Q scale for feeding problems 37 loss ready reckoner 38 BMI calculator 43 Tasks relating to the goals of care associated with loss 45 Acknowledgements 52 List of Figures Figure 1 Framework overview 3 Disclaimer These guidelines were written during the Decision-making frameworks in advanced dementia: Links to improved care project, a partnership between the University of Western Sydney School of Nursing and Midwifery, College of Health & Science; Sydney West Area Health Service Primary Care & Community Health Network; and the Blue Mountains GP Network Ltd. Funded by the Australian Government Department of Health and Ageing under the National Palliative Care Program. The opinions expressed in this document are those of the authors and not necessarily those of the Australian Government. The information provided is a general guide only. Refer to the general practitioner and other members of the treatment team for decisions relating to care of individual residents. The information provided in these guidelines is based on the available best practice literature, or in the absence of this literature, expert opinion.

3 Figure 1: Weight loss framework overview Weight loss framework for residents with advanced dementia On admission: 1. give the family members a copy of the severe & end stage dementia information booklet; 2. identify the goals of care; 3. gather baseline data; 4. develop the nutrition care plan; 5. give out the loss pamphlet before the first family conference; 6. weigh every week for 3 weeks. NB Every resident with advanced dementia is at HIGH RISK of loss. Standard practice: 1. provide daily food & fluids individualised to the resident s needs; 2. provide daily mouth care; 3. weigh the resident & calculate the BMI monthly. If the resident loses per the criteria (without intent), then within 3 days: Assess further; and trial 1 st line interventions NB consult a dietitian for assistance with menus and individual diets; and a speech pathologist for swallowing problems. 1a. ASSESS. Aim to complete the assessment within 7 1b. 1 ST LINE INTERVENTIONS. Trial the interventions for 2 weeks days: 1. give extra help & allow extra time for the resident to eat; 1. assess how much the resident is eating; 2. increase the amount of food offered; 2. assess for common causes of eating problems; 3. seek additional advice if required, from speech pathologist, dietitian, general practitioner, 3. then start 1st line interventions. dentist; 4. evaluate the outcome; DOCUMENT THE INTERVENTIONS TRIALLED Continued on the next page Decision-making frameworks in advanced dementia: Links to improved care project. Page 3 of 52

4 Is the resident is still losing? Yes No 2a. ASSESS. Aim to complete the assessment within 7 days: 1. review the goals of care; 2. refer to the GP for review of reversible causes of loss; 3. review standard practice again; 4. then start 2nd line interventions. 2b. 2 ND LINE INTERVENTIONS: Trial the interventions for 2 weeks 1. treat any reversible causes of loss; 2. provide energy enriched foods & fluids; 3. start supplements if necessary; 4. continue to give extra help & allow extra time for the resident to eat; 5. evaluate the outcome; 6. DOCUMENT THE INTERVENTIONS TRIALLED Then: 1. continue to give extra assistance & allow extra time for the resident to eat, and provide extra food as tolerated; 2. return to monthly weighing & BMI, unless the goals of care change; 3. if loss starts again, go to 2a and assess again, then start 2 nd line interventions (2b). Is the resident is still losing? Yes No 3a. If loss has continued, assess further. Aim to complete the assessment within 7 days: Check whether the following are actually being given: 1. all standard practice strategies; 2. additional time and assistance during meals and snack times; 3. energy-enriched foods & fluids; Have the reversible causes of loss been addressed? Then start 3rd line interventions. 3b. 3rd line intervention: Trial the interventions for 2 weeks 1. increase the quantity of energy-enriched foods & fluids; 2. start or increase supplements; 3. evaluate the outcome; 4. DOCUMENT THE INTERVENTIONS TRIALLED. Then: 1. continue to give extra assistance & allow extra time for the resident to eat, and provide extra food as tolerated; 2. return to monthly weighing & BMI, unless the goals of care change; 3. if loss starts again, go to 2a and look for reversible causes of loss, then move to 3a, start 3 rd line interventions (3b). Continued on the next page Decision-making frameworks in advanced dementia: Links to improved care project. Page 4 of 52

5 Is the resident is still losing? Yes No 4a. If loss has continued, assess further. Aim to complete the assessment within 7 days: Check whether the following are actually being given: 1. all standard practice strategies; 2. additional time and assistance during meals and snack times; 3. energy-enriched foods & fluids; Have the reversible causes of loss been addressed? Then start 4 th line interventions. 4b. 4 th line intervention: medication pass supplement. Trial the interventions for 2 weeks 1. continue to offer energy- enriched foods and additional time and assistance; 2. commence a medication pass supplement; 3. evaluate the outcome; 4. DOCUMENT THE INTERVENTIONS TRIALLED. Then: 1. continue to give extra assistance & allow extra time for the resident to eat, and provide enriched food +/- supplements as tolerated; 2. return to monthly weighing & BMI, unless the goals of care change; 3. if loss starts again, go to 4 and assess, then start 4 th line interventions (4). Yes No Yes Is the resident is still losing? No 5. Then: Consider whether the cause of the loss is irreversible. 1. ask the GP to assess the resident for possible cachexia; 2. hold a family conference to discuss the loss. Include the GP, person responsible +/- other family members, and members of the care team; If the consensus opinion is that this loss is irreversible, due to advanced progressive disease, then: x STOP weighing the resident; x DOCUMENT in the care plan and resident s notes that no further investigations or monitoring of loss will be done; provide food & fluids that the resident likes, that are of the right type, texture & consistency for the resident, +/- medication pass supplements if enjoyed; give ongoing emotional support and information to the family members; Continue with this regime until the resident is receiving end of life (terminal) care. Decision-making frameworks in advanced dementia: Links to improved care project. Page 5 of 52 Then: 1. keep providing all standard practice in the way food & fluids are offered + medication pass supplement + enriched foods; 2. return to monthly weighing & BMI, unless the goals of care change; 3. move to no 5 and discuss causes of irreversible loss if is not maintained.

6 Introduction These guidelines are for nurses and care staff to use when managing loss in residents with advanced dementia (Mini Mental State Examination score < 10). For additional information, please refer to the Supporting Information provided with these guidelines. Nursing competencies are also available to assist with education of residential aged care facility staff. NB: Registered nurses remain responsible for the assessment and care of residents at all times, even if they delegate tasks to other staff members to complete. On admission of a person with advanced dementia 1. Give the person responsible +/- other family members a copy of the booklet: Dementia information for carers, families and friends of people with severe and end stage dementia. 2 nd edition. 2. Identify the goals of care. Discuss with the person responsible +/- family members, general practitioner and other members of the care team what the goals of care are. Goals of care should be discussed at every family conference relating to the resident s clinical care. Is the resident to receive: active interventions, when you will look for and treat all causes of loss; a palliative approach, where you will carefully monitor loss and manage problems if they occur, with care focussed on maintaining the quality of life and comfort of the resident. Assessment for causes of loss will continue unless the person responsible and general practitioner +/- family members agree that limited assessment only will be undertaken. Care that focuses on the resident s comfort, psychological, social and spiritual needs, and the needs of the person responsible and family members are always provided as part of the palliative approach; or end of life (terminal) care, when death is likely to occur in the next days or weeks, and you will focus on resident comfort, and provide emotional support to the person responsible and family members. The goals of care for a person with advanced dementia who loses should be realistic due to the progressive nature of the dementia. The focus of the goal of care for loss may not be to regain but rather to minimise any loss and to maintain independence. The goal of care for a person with end stage dementia who is cachectic should be comfort only. Document the goals of care in the resident s notes and on the care plan. Decision-making frameworks in advanced dementia: Links to improved care project. Page 6 of 52

7 3. Gather baseline data. 3a: Assess the resident for his/her nutrition needs and look for the common causes of loss: Assess: food & fluid preferences: size of meals, type & consistency of meals, cultural preferences including rituals associated with meals; ability to self-feed. Look for tremors, ataxia, weakness in hands and arms, joint pain; ability to chew and swallow food, ability to swallow fluids; history of febrile episodes of unknown origin, or repeated chest infections, that could indicate that the resident is aspirating food or fluids; history of loss or appetite changes; medical conditions known to cause loss: depression; nausea, vomiting constipation or diarrhoea; fluid retention or infections; problems with mouth, teeth (including dentures) & gums; review the medications the resident takes. Dioxin, antibiotics and non-steroidal anti-inflammatory medications are commonly associated with nausea, vomiting & diarrhoea. Look for any that may cause loss; complete a physical assessment, including a pain assessment. Every resident with advanced dementia is at HIGH RISK of loss. Seek advice from the general practitioner and/or a dietitian and/or a speech pathologist as appropriate if there are medical problems associated with loss; daily menus and meal planning; and/ or ability to swallow noted on admission. Further assessment may be required STOP: LIMIT FURTHER ASSESSMENTS IF: the goal of care is for end of life (terminal) care; or the goal of care is a palliative approach, and during the goals of care discussion it is agreed that further assessment will be limited. Food will be given for the resident s comfort and pleasure. Limited assessments mean: no weighing the resident or calculating the BMI; no pathology tests to establish the causes of loss; no X-Rays to establish the causes of loss; no other diagnostic tests to establish the causes of loss. The following assessments and care WILL CONTINUE: assessing the resident regularly for feeding difficulties; assessing the resident regularly for swallowing difficulties; Decision-making frameworks in advanced dementia: Links to improved care project. Page 7 of 52

8 the standard practice of daily food & fluid provision will be monitored. Full assistance will be given for feeding as required; food and fluids will be given that the resident likes and that are the right type & consistency for the resident. If the resident is receiving end of life (terminal) care: the resident s level of consciousness and ability to swallow will be assessed at least daily before offering food & fluids. If the resident is receiving end of life (terminal) care and is unable to swallow, appropriate mouth care only will be offered. DOCUMENT the reasons for the decision to limit further assessments in the resident s notes. Make sure the care plan reflects the goals of care. Record on the chart that no further assessment is required. 3b Assess for under nutrition: use the Mini Nutritional Assessment (MNA tool) ; weigh the resident; measure the resident s height. NB: do not rely on the memory of family members. Height reduces with age; calculate the resident s body mass index (BMI). 3c Complete baseline pathology tests: (There is no need to repeat these tests if the resident has had blood tests in the past 3 months). Review the results of these pathology tests: serum albumin; multiple biochemical analysis (MBA 20); fasting blood sugar level; B12 levels; thyroid function tests. 4. Develop a nutrition care plan based on the needs & preferences of the resident. 5. Give the resident and/or the person responsible +/- family members a copy of the pamphlet Weight loss in advanced dementia to read before the resident s first family conference is held in the facility. 6. Weigh weekly for 3 weeks to gather baseline data on. This completes the loss section of the admission. Decision-making frameworks in advanced dementia: Links to improved care project. Page 8 of 52

9 Monitoring Monitoring for loss (weighing and BMI calculation) should occur: monthly, if is stable; weekly while the resident is losing and is receiving assessment and interventions for loss; UNLESS there is a documented discussion that further assessment should be limited. A registered nurse needs to review the & BMI chart: monthly, if is stable; weekly, if assessment and interventions for loss are being implemented. Criteria for loss 1 that needs assessment and intervention: a loss of in one month, 7. in 3 months, or 10% in 6 months; a decline in food intake over several days (not to exceed 7 days) noted by family or staff that is not associated with acute illness or a new medication. An abrupt change, when food is refused for two or more successive meals, is usually associated with acute illness or a new medication; a slow decrease in the BMI to <19; persistent, unexpected and unintended loss for 3 consecutive months. If any of these criterion are met, proceed within 3 days to 1 st line assessment and intervention. Decision-making frameworks in advanced dementia: Links to improved care project. Page 9 of 52

10 Standard Practice Prevention of reversible causes of loss in residents improves the quality of life and comfort for the resident and is more cost effective for the facility. The following standard practice should be undertaken continuously: 1. Provide daily food & fluids: provide foods and fluids by the clock. A resident with advanced dementia will not recognise hunger or thirst, so will not ask for food or drink; check regularly that the foods provided each day are those that the resident likes; that the foods are culturally appropriate; of the right consistency and quantity for the resident; and provide sufficient energy to maintain ; regularly assess the resident for swallowing problems, and refer to a speech pathologist for recommendations if dysphagia is a problem; residents with advanced dementia rarely need dietary restrictions. Discuss with the general practitioner and remove any that are inappropriate; residents with diabetes should be able to have a small amount of sugar on their cereal and in their milk drinks; make sure that residents being given thickened fluids and pureed foods are still offered snacks at morning and afternoon tea; make food as attractive as possible, include garnishes and seasonings to increase the appearance and taste of the foods; provide finger foods so the resident can feed him/herself and maintain independence; provide feeding aids to maintain the resident s independence; provide sufficient fluids each day (approximately 8 cups per day); arrange for the resident to receive as much assistance for feeding as he/she needs, encourage eating but do not force the resident to eat; allow plenty of time for feeding the resident, or supervising the resident while he/she eats; make sure the environment is pleasant and not overstimulating during meal times; make sure the person feeding the resident sits at eye level to improve the resident s social well-being; make sure the resident is positioned so he/she will not choke. Decision-making frameworks in advanced dementia: Links to improved care project. Page 10 of 52

11 If the resident is receiving end of life (terminal) care: the resident s level of consciousness and ability to swallow will be assessed at least daily before offering food & fluids. If the resident is receiving end of life (terminal) care and is unable to swallow, appropriate mouth care only will be offered. 2. Provide daily mouth care 2 : problems with the mouth, teeth and gums can be reduced by good oral hygiene and regular assessment; the resident s mouth should be rinsed with water, and his/her teeth cleaned with a soft toothbrush, toothpaste and water; refer to a dentist, or seek advice from the general practitioner if problems with the mouth, teeth and gums occur. Decision-making frameworks in advanced dementia: Links to improved care project. Page 11 of 52

12 The Framework An overview of the framework can be found in Figure 1 in this document. 1. If the resident unintentionally loses per the criteria, then within 3 days: 1a. start to assess further (complete within 7 days); then 1b. trial 1 st line interventions The most common reason for loss among people living in residential aged care facilities is insufficient care: not enough time and assistance are provided to enable the resident to eat enough food. 1a. Assess further Registered nurse (RN) or delegate: check whose responsibility it is to recalibrate the scales. Organise regular recalibration if there is a problem with the scales accuracy; confirm that the loss is really unintended or unexpected: discuss with the care staff and family members; ask the care staff to re-weigh the resident to validate the previous measurements if you think the is inaccurate. If reweighing validates that is lost, commence further assessment: a) Assess how much the resident is eating: ask the care staff to monitor and record the resident s food intake for 1-3 days to establish how much food the resident is actually eating, and when he/she is eating it. Use a form such as the example attached to this document, to gain an accurate picture of what is being consumed and when; then: Decision-making frameworks in advanced dementia: Links to improved care project. Page 12 of 52

13 b) Assess for common causes of eating problems: Observe the resident during a meal to see how much assistence he/she is receiving; and for signs of swallowing difficulties; are there new dental and oral health problems affecting eating? Check the mouth, and discuss the daily mouth care with the care staff. Direct the care staff to alter the mouth care protocol if necessary; check with the care staff whether signs of dysphagia are apparent: food sticking in the throat; choking or coughing when being given food or fluids; dribbling a lot; difficulty chewing or moving the bolus (ball of food in the mouth); taking longer to finish a meal; holding food or fluids in the mouth and not being able to start swallowing. See procedures section for a more detailed list. Consider nil by mouth if dysphagia is present until a full assessment can be completed by a speech pathologist. Discuss with the general practitioner; review the resident for common medical causes of loss, including pain or constipation, which can affect the amount of food eaten. Discuss with the care staff whether there have been behavioural changes that could indicate discomfort. Complete further nursing assessment if necessary. review the current diet: is the resident receiving enough energy from food to compensate for behaviors such as wandering or pacing?; does the resident like the food offered? The resident may prefer sweeter or spicier foods. Ask the care staff and family members; is the resident still receiving a therapeutic diet? Discuss with the general practitioner and stop if possible (especially low fat diets); is enough feeding assistance available?; has enough time been set aside for the resident to eat slowly?; are there environmental factors distracting the resident when eating? ask a care staff member who regularly feeds the resident to complete an Ed- FED scale for feeding difficulties (a copy is in the back of these guidelines); discuss with the care staff whether the resident s ability to self-feed has changed. Care staff: reweigh the resident if requested to do so by the RN; Decision-making frameworks in advanced dementia: Links to improved care project. Page 13 of 52

14 complete a daily food & fluid record for 1-3 days, if requested by the RN. Ask for training if you are unsure how to measure the food and fluids, or complete the chart; complete an Ed-FED scale for feeding difficulties if requested by the RN. Ask for training if you are unsure how to complete the scale; report to the RN any changes you have noticed in the way the resident eats and drinks. Can the resident still feed him/herself? Have swallowing problems started?; report to the RN or person in charge if the resident s behaviour indicates discomfort eg agitated, restless, aggressive, more confused than normal, more quiet than usual, seeing or hearing things that aren t there; participate in all discussions relating to the way food and fluids are provided. Review all the evidence collected, then move to implement 1 st line interventions immediately. Tailor the interventions to the findings. 1b. 1 st line interventions, based on the findings of the assessment. (1 st line interventions are to give extra help & allow extra time for the resident to eat) Trial these strategies for two weeks, then review. Registered nurse (RN) or delegate: 1. Give extra help and allow extra time for the resident to eat: supervise the care staff so that the resident receives additional assistance to eat and drink, during every meal, and snack times; direct the care staff to provide extra time for the resident to complete meals if the resident is slow in eating. Review for swallowing problems. Needing extra Decision-making frameworks in advanced dementia: Links to improved care project. Page 14 of 52

15 time to eat may be a sign that dysphagia is. Advise kitchen / domestic staff if necessary, so that plates will not be removed too quickly; direct the care staff to encourage the resident to eat, without forcing him/her. 2. Increase the amount of food offered: ask a dietitian to review the resident s diet and individualise the meal plan. Provide him/her with a copy of the completed food intake charts previously completed as evidence of the usual pattern of food consumption; discuss with the cook/kitchen staff and increase the size and quality of betweenmeal snacks. E.g. give the resident a muffin rather than a plain biscuit. Check that residents receiving thickened fluids and pureed food are being offered food and fluids at morning and afternoon tea times, and supper; direct the care staff to increase the fluids being offered to the resident. Aim to give between 50ml-100ml every hour while the resident is awake, unless medically contraindicated. 3. Seek additional advice if required: refer to the speech pathologist if necessary for swallowing problems, and follow the recommendations given. Discuss any recommendations in full with the care staff. Copy the recommendations and place them where care staff can see them during meal times if there is any doubt that they are not being followed; seek dental assistance if necessary to improve the condition of the resident s mouth, teeth, gums or dentures. Discuss any recommendations in full with the care staff; refer to the general practitioner if necessary and treat medical causes of loss that have been identified. Care staff: feed the resident slowly and carefully. Engage his/her interest by chatting to the resident. Sit at eye level to feed. Don t overload the spoon, and watch carefully for signs that the resident is having swallowing problems; Decision-making frameworks in advanced dementia: Links to improved care project. Page 15 of 52

16 position the resident correctly. Follow the speech pathologist s recommendations; never force the resident to eat; discuss with the RN and other care staff if a resident is developing aversive behaviours (eg turning his/her head away from the food; allowing food to drop out of the mouth). Complete an Ed-FED scale and give to the nurse in charge, so that all nurses and care staff can discuss and decide what action to take in the resident s best interests. A family conference may be required. 4. Evaluate the outcome of this intervention: weigh the resident each week for two weeks; if the loss is reversed ( is stable, or is gained) at the end of two weeks, continue with the 1 st line interventions you have started; resume monthly weighing and calculation of the BMI. if further is lost, move immediately to the next level of assessment and 2 nd line interventions; inform the person responsible and family members of the results of the assessment and interventions; make sure the resident s notes and care plan reflect accurately the interventions undertaken and the outcome of the interventions. Decision-making frameworks in advanced dementia: Links to improved care project. Page 16 of 52

17 If loss continues: 2a. start to assess further (complete within 7 days); then 2b. trial 2 nd line interventions If the resident continues to lose after 2 weeks of providing additional help and time with eating/feeding, then assess him/her further. Commence this assessment immediately after the evaluation of the 1 st line interventions has shown that loss is continuing. Complete all of this additional assessment within 7 days. 1. Review the goals of care. Are the goals of care still relevant for the resident? For example, if the resident s dementia has progressed towards end stage, the person responsible and family members need to know that further assessment of loss might cause discomfort and distress to the resident. The resident may need pathology tests and X-Rays, and may need to be taken from the facility to have the tests completed. give the person responsible and family members a copy of the pamphlet Weight loss in advanced dementia if they haven t received a copy or don t remember it; assess the resident to see whether dementia progression has occurred; discuss the goals of care with the person responsible and the family members and general practitioner before proceeding further with assessments. STOP: LIMIT FURTHER ASSESSMENTS IF: the goal of care is for end of life (terminal) care; or the goal of care is a palliative approach, and during the goals of care discussion it is agreed that further assessment will be limited. Food will be given for the resident s comfort and pleasure. Limited assessments mean: no weighing the resident or calculating the BMI; Decision-making frameworks in advanced dementia: Links to improved care project. Page 17 of 52

18 no pathology tests to establish the causes of loss; no X-Rays to establish the causes of loss; no other diagnostic tests to establish the causes of loss. The following assessments and care WILL CONTINUE: assessing the resident regularly for feeding difficulties; assessing the resident regularly for swallowing difficulties; the standard practice of daily food & fluid provision will be monitored. Full assistance will be given for feeding as required; food and fluids will be given that the resident likes and that are the right type & consistency for the resident. If the resident is receiving end of life (terminal) care: the resident s level of consciousness and ability to swallow will be assessed at least daily before offering food & fluids. If the resident is receiving end of life (terminal) care and is unable to swallow, appropriate mouth care only will be offered. DOCUMENT the reasons for the decision to limit further assessments in the resident s notes. Make sure the care plan reflects the goals of care. Record on the chart that no further assessment is required. 2. Refer to the general practitioner for review of the treatable causes of loss: Registered nurse (RN) or delegate: Before contacting the general practitioner: review the resident s fluid intake. Direct the care staff to record a fluid intake chart for 1 3 days; review the resident s behavior: is depression a problem? Screen for depression using the Cornell Scale for Depression in Dementia; complete a urinalysis, review the bowel chart for constipation, direct the care staff to complete a pain assessment tool each shift for 1-3 days. Care staff: complete a fluid intake chart as directed by the RN; discuss the resident s behaviour with the RN and other members of the care team. Have there been changes that indicate depression (more withdrawn, quieter, apathetic? Has the resident been uncomfortable due to pain, Decision-making frameworks in advanced dementia: Links to improved care project. Page 18 of 52

19 constipation, an infection? Complete a pain assessment tool as directed by the RN or nurse in charge. Report the findings of the reviews of fluid intake, depression, urinalysis, pain, constipation to the general practitioner and ask him/her to consider whether the loss is due to a reversible cause such as: fluid and electrolyte imbalance; depression; medications known to affect loss; chronic infections affecting loss; metabolic disorders such as hyperthyroidism. The resident may need the following procedures to establish a diagnosis: pathology tests: eg full blood count; metabolic profile (liver enzymes, total protein and albumin, calcium and phosphorus, cholesterol and magnesium); thyroid function tests; chest x-ray; urine culture; digital rectal examination. 3. Go back and review the standard practice of providing food, fluids and mouth care (see page 10). 4. Start 2 nd line interventions. Decision-making frameworks in advanced dementia: Links to improved care project. Page 19 of 52

20 2 nd line interventions, based on the findings of the assessment. (2 nd line interventions are to treat potentially reversible causes of loss and provide energy-enriched foods & fluids). Implement these strategies for two weeks, then review. Registered nurse (RN) or delegate: 1. Treat any reversible causes of loss: follow the recommendations of the general practitioner to treat any potentially reversible causes of loss. 2. Provide energy-enriched foods & fluids: if the facility has a high-energy nutrition menu, commence the resident on it; provide high-energy snacks; offer increased amounts of high-energy fluids, such as milkshakes and smoothies; seek advice from a dietitian if an individual nutrition plan is required. The Supporting Information and page 30 of these guidelines provide some suggestions for enriching foods and fluids. Discuss with the appropriate people in the facility how the enriched foods will be supplied and who is responsible for this to occur. If additional energy is not being reliably consumed by the resident from the food & fluids offered in the facility, then a supplement of an oral nutrition support product(s) (eg Ensure) can be trialled. These are available as fluids, powders and puddings and come in a variety of flavours. NB: best practice care for a resident losing is to provide food & fluids based on an individualised nutrition plan. Research has revealed that over half of the residents studied being given supplements didn t like the supplements, and almost half of the supplements were not consumed and were wasted each day. Additionally, there is some evidence that using Decision-making frameworks in advanced dementia: Links to improved care project. Page 20 of 52

21 supplements may actually suppress the resident s appetite, so the resident eats less ordinary food each day. Offer supplements at least one hour before meals to reduce the chance of appetite suppression. If supplements are to be used, discuss with the person responsible and family members first. Note that these supplements are unlikely to produce gain in a resident who is already cachectic. After discussion and agreement to proceed: direct the care staff to assist and encourage the resident to eat / drink 125ml nutrition support supplement at morning tea and either afternoon tea or supper; direct the care staff to assist the resident to drink a full 250ml serve of a nutrition support supplement if the resident misses eating a meal. Care staff: assist with giving enriched foods and fluids as ordered; offer supplements as ordered. Report to the nurse in charge if the resident is not eating / drinking the supplements. 3. Continue to give extra help and allow extra time for the resident to eat. 4. Evaluate the outcome of this intervention weigh the resident each week for two weeks; discuss with the care staff whether the supplements are being consumed and enjoyed. Review the bowel chart for changes that may have occurred since the introduction of the supplements, and amend bowel care program if necessary; if the loss is reversed ( is stable, or is gained) at the end of two weeks, continue with this strategy; resume monthly weighing and calculation of the BMI. if further is lost, move immediately to the next level of assessment and 3 rd line interventions; Decision-making frameworks in advanced dementia: Links to improved care project. Page 21 of 52

22 inform the person responsible +/- family members of the results of the assessment and interventions; make sure the resident s notes and care plan reflect accurately what intervention was undertaken and the outcome. Decision-making frameworks in advanced dementia: Links to improved care project. Page 22 of 52

23 If loss continues: 3a. start to assess further (complete within 7 days); then 3b. trial 3 rd line interventions If the resident continues to lose after treating any reversible causes of loss, and giving him/her enriched foods & fluids for 2 weeks, with or without supplements, then further assessment is required before moving to the next line of interventions. Commence this assessment immediately after the evaluation of the 2 nd line interventions has shown that loss is continuing. Complete all of this additional assessment within 7 days. Check whether the following strategies are actually being undertaken: 8. all standard practice strategies; 9. providing additional time and assistance during meals and snack times; 10. providing energy-enriched foods & fluids, with or without supplements. Have the treatable causes of loss been addressed? Seek advice from a dietitian if you have not already done so for this resident. Then start 3 rd line interventions. Decision-making frameworks in advanced dementia: Links to improved care project. Page 23 of 52

24 3 rd line interventions, based on the findings of the assessment. (3 rd line interventions are to increase supplements). Implement these strategies for two weeks, then review If the resident does not tolerate the increased volume of these supplements, move straight to 4 th line interventions. Check with the care staff after the first 2-3 days of trialling the additional nutrition support supplements. 1. Increase supplements or commence supplements If the resident has not been trialled on an oral liquid supplement, commence per 2 nd line intervention: assist the resident to eat / drink 125ml nutrition support supplement at morning tea and either afternoon tea or supper; if the resident does not eat a meal, assist him/her to eat/drink a full 250ml serve of a nutrition support supplement if possible. If the resident is eating / drinking & enjoying the nutrition support supplements, but still losing, then : increase the nutrition support supplements to 500ml per day; give 125 ml per serve, four times per day, after offering breakfast, lunch, dinner and supper; provide a range of flavours so the resident doesn t get tired of the same taste; continue all previous interventions plus all standard practice recommendations. 2. Evaluate the outcome of this intervention: weigh the resident each week for two weeks; if the loss is reversed ( is stable, or is gained) at the end of two weeks, continue with this strategy; resume monthly weighing and calculation of the BMI. if further is lost, move immediately to 4 th line interventions; inform the person responsible +/- family members of the results of the assessment and interventions; make sure the resident s notes and care plan reflect accurately what intervention was undertaken and the outcome. Decision-making frameworks in advanced dementia: Links to improved care project. Page 24 of 52

25 4. If loss continues: 4a. start to assess further (complete within 7 days); then 4b. trial 4 th line interventions If the resident continues to lose after treating any reversible causes of loss, and giving him/her enriched foods & fluids, and supplements, for 2 weeks, then further assessment is required before moving to the next line of interventions. Commence this assessment immediately after the evaluation of the 3 rd line interventions has shown that loss is continuing. Complete all of this additional assessment within 7 days. Check whether the following strategies are actually being undertaken: 1. all standard practice strategies; 2. providing additional time and assistance during meals and snack times; 3. providing energy-enriched foods & fluids, and supplements. Have the treatable causes of loss been addressed? Seek advice from any allied health specialist necessary: speech pathologist, dentist, dietitian if you have not already done so for this resident. Then start 4 th line interventions. Decision-making frameworks in advanced dementia: Links to improved care project. Page 25 of 52

26 4 th line interventions, based on the findings of the assessment. (4 th line interventions are medication pass supplements). Implement these strategies for two weeks, then review. 1. Continue to provide energy- enriched foods and additional time & assistance: offer the resident foods and snacks of the right texture that he/she likes; enrich them whenever possible; assess intake of nutrition support supplements commenced during 2 nd or 3 rd line interventions. Cease offering them if the resident will not consume them. 2. Commence a medication pass supplement: Medication pass supplements are given 3 to 4 times per day, when the resident s regular medications are given. NB giving these supplements as part of the medication round has been shown to decrease cost and wastage. commence the resident on one of the nutrient dense formulas that are available eg TwoCal (Abbott); Novasource 2 (Novartis). One millilitre of these products typically contains 2 kcal. give 60ml of the nutrient dense formula 3 to 4 times per day, with the resident s medications UNLESS the medications cannot be taken with food. This will give up to an additional 480 kcal per day; check with the GP or pharmacist if you are unsure about which medications can be given at the same time as these products; titrate the amount of nutrient dense formula the resident receives if necessary or review the prescription if the resident shows signs of intolerance eg loose stools. 3. Evaluate the outcome of this intervention: weigh the resident each week for two weeks; if the loss is reversed ( is stable, or is gained) at the end of two weeks, continue with this strategy; resume monthly weighing and calculation of the BMI. if loss continues despite all the above interventions then consider whether the loss is irreversible. Decision-making frameworks in advanced dementia: Links to improved care project. Page 26 of 52

27 inform the person responsible +/- family members of the results of the assessment and interventions; make sure the resident s notes and care plan reflect accurately what intervention was undertaken and the outcome. Decision-making frameworks in advanced dementia: Links to improved care project. Page 27 of 52

28 5. If loss continues: consider whether the cause of the loss is irreversible If the resident continues to lose despite all the above interventions then you need to consider whether the loss is unavoidable, due to cachexia from advanced disease. Assessment at this time is important, as the prognosis of the resident will be discussed, and the goals of care and care plan of the resident will be impacted Ask the GP to assess the resident to see if he/she is cachectic; 2. Hold a family conference to discuss the loss: invite the person responsible +/- other family members, members of the multidisciplinary care team and the GP; discuss the resident s medical condition, dementia progression, other comorbidities, prognosis, and most appropriate methods of providing comfort care; discuss the issues of loss experienced by the resident, and the interventions trialled to date; discuss the burdens and benefits of invasive procedures aimed at preventing further loss, such as insertion of PEG tubes for artificial feeding; discuss dysphagia, including what the plans will be if the resident repeatedly aspirates. The Supporting Information provides further information. If the consensus agreement of those present at the case conference is that loss is cachectic in nature and therefore irreversible, then: stop weighing the resident or monitoring loss; stop investigating the causes of loss; provide limited assessments per the criteria listed below; continue to treat reversible causes of loss that are symptomatic and causing distress to the resident; provide foods and fluids that the resident likes, of the right texture so the resident can swallow them; continue medication pass supplements if the resident enjoys them; provide ongoing emotional support and information to the person responsible +/- the other family members; review the goals of care so that comfort care only is the priority. Decision-making frameworks in advanced dementia: Links to improved care project. Page 28 of 52

29 Refer to the Supporting Information for further information relating to artificial nutrition and hydration. Limited assessments mean: no weighing the resident or calculating the BMI; no pathology tests to establish the causes of loss; no X-Rays to establish the causes of loss; no other diagnostic tests to establish the causes of loss. The following assessments and care WILL CONTINUE: assessing the resident regularly for feeding difficulties; assessing the resident regularly for swallowing difficulties; the standard practice of daily food & fluid provision will be monitored. Full assistance will be given for feeding as required; food and fluids will be given that the resident likes and that are the right type & consistency for the resident. DOCUMENT the reasons for the decision to limit further assessments in the resident s notes. Make sure the care plan reflects the goals of care. Record on the chart that no further assessment is required. Continue with this regime until the resident is receiving end of life (terminal) care. Decision-making frameworks in advanced dementia: Links to improved care project. Page 29 of 52

30 Procedures Weighing a resident make sure the scales are accurate (calibrate if necessary); use the same scales each time; weigh the resident at the same time of the day each time, preferably before breakfast; dress the resident in the same clothes each time eg pyjamas if weighing before breakfast. A ready-reckoner is available in the back of these guidelines to calculate loss among residents weighing between 30kg and 102 kg. How to measure the height of a resident unable to stand to be measured. If the resident is unable to stand to be measured, then calculate the height with the formula provided below. To measure the length of the lower leg from the bottom of the heel to the top of the knee cap: sit the resident in a chair with bare feet flat on the floor. The knee joint should be at a right angles to the floor. Measure from the bottom of the heel on the floor to the top of the kneecap. Calculate using this formula 3 : For females: (0.24 x age) + (1.83 x knee height in cm). For example, Mrs Smith is an 82 year old. Her knee height is is 47cm. (0.24 x 82 (age) = (1.83 x 47 (knee height) = = cm Mrs Smith is cm tall. For males: (0.04 x age) + (2.02 x knee height in cm) For example, Mr Johnstone is 91 years old. His knee height is 55cm (0.04 x 91 (age) = (2.02 x 55 (knee height) = = 171.6cm Mr Johnstone is cm tall. Decision-making frameworks in advanced dementia: Links to improved care project. Page 30 of 52

31 How to calculate the body mass index (BMI) The BMI is calculated by dividing in kilograms by height in metres squared (m 2 ). For example, Mrs Smith (above) weighs 50kg, and is 1.51 metres tall = / 2.28 = 22 (21.9 rounded to next highest figure). Mrs Smith has a BMI of 22 and is within the healthy range. Mr Johnstone (above) weighs 53kg, and is 1.71 metres tall = / 2.92 = 18. Mr Johnstone has a BMI of 18 and is very under. He requires immediate assessment to understand the causes of his loss. A BMI ready-reckoner is attached to assist with calculation of the BMI. Numerous internet sites provide BMI calculators to instantly calculate a BMI. One site is: Enter the height (in metres) and the, the BMI will be calculated for you. What to discuss about loss in advanced dementia during the resident s first family conference loss across the dementia trajectory; potentially reversible causes of loss; irreversible causes of loss; common feeding problems in advanced dementia, and how they are managed; need for dietary restrictions and therapeutic diets; how loss is monitored and the criteria for interventions; interventions, including enriching foods, giving supplements, altering food texture for swallowing deficits, and the benefits and burdens of tube feeding. Decision-making frameworks in advanced dementia: Links to improved care project. Page 31 of 52

32 How to increase the energy content of foods & fluids For residents unable to eat large amounts, the best first option is to increase the energy content of the daily foods. Simple ideas for increasing the energy content of foods include: adding extra butter or margerine to mashed potato and other vegetables; adding cheese to mashed potato, pasta, casseroles, scrambled eggs; adding cream to desserts and porridge; adding skim milk powder to milk, soup, porridge, white sauce, cheese sauce, baked custard; offering additional finger foods. A dietitian can provide suggestions that are appropriate for individual residents. See the Supporting Information for further ideas. Fluid requirements and how to increase fluid intake the recommended intake of water (over and above the water available from foods and by-products of metabolism) for older people in residential aged care is a minimum of 1600ml every 24 hours. This is approximately 8 glasses or cups (200ml size) per day; in certain conditions such as heart failure this amount of fluid may need to be restricted; fluid can also be provided in the form of soups, fruit juices, yoghurt, milkshakes and smoothies, chocolate drinks such as Ovaltine, Milo and Aktavite, and soupin-a-cup. Tips for increasing fluid intake 4 : for residents who do not recognise a cup or glass placed on the table, put the glass in the resident s hand and show him/her what needs to happen; milk and fruit drinks are more easily seen in clear drinking glasses; use small cups or tumblers, they are easier to manage; prompt the resident to remind him/her to drink regularly; develop strategies to promote hydration tailored to assist the staff giving care. eg build drinks breaks into every activity being undertaken in the facility; cognitively impaired residents might respond better if they are offered a choice of drinks when being prompted to drink. Decision-making frameworks in advanced dementia: Links to improved care project. Page 32 of 52

33 Signs of dysphagia: what care staff should look for and report 5 Initial signs of dysphagia include reduced chewing and behavioural problems affecting eating 6. Other symptoms of dysphagia include: food sticking in the throat; coughing before, during or after swallowing; choking on food or fluids; nasal or oral regurgitation 7 ; needing to swallow 3 or 4 times with each bolus; frequently clearing the throat; hoarse, breathy or wet-sounding voice; drooling of food, fluid or saliva; difficulty chewing or manipulating the bolus; pooling of food in the mouth; difficulty to swallow; gurgly or wet sounding respiration; shortness of breath during meals; protruding tongue movements; increased time to finish a meal. The Supporting Information provides further information about dysphagia and aspiration. Decision-making frameworks in advanced dementia: Links to improved care project. Page 33 of 52