A new approach to assessing nutrition and hydration capacity in patients with dementia
Patients living with dementia often present to hospital with signs that they do not eat or drink enough. The challenge is to identify those patients who have a reversible underlying cause and may therefore benefit from a trial of non-oral feeding. This is an evidence poor area with a lot of legislation.
Inserting nasogastric (NG) tubes in patients where failure of oral intake is due to disease progression is not known to improve outcome1,2 and as such, could be considered harmful. However, where reversible illness exists, a patient may benefit from a trial of NG feeding3,4,5, and excluding a patient from this intervention on the basis of a diagnosis of dementia could constitute neglect.
The team at Mid Essex Hospitals NHS Trust (MEHT) developed a flowchart to ensure that these decisions are approached in a consistent, multidisciplinary and holistic way. The collaborative effort involved input from geriatricians, our dementia specialist team, speech and language therapists and dieticians. The flowchart also acts as a decision aide to prompt clinicians to consider Mental Capacity Act (MCA) and Deprivation of Liberty Safeguarding (DOLS) assessments for patients who lack capacity, using a standardised approach which is compliant with current legislation.
Following a successful pilot period, the flowchart has been rolled out for use across the Trust. A retrospective case note review has been performed and we identified a variety of cases which demonstrates people’s likely outcomes.
A patient with known vascular dementia was admitted after being found on the floor. Prior to admission, she was living alone and mobilising with a stick. CT scan showed an established left middle cerebral artery territory infarct, while MRI revealed a new right lacunar infarct. She was noted to have swallowing issues which was resulting in a poor oral intake.
Following use of the feeding pathway, a multidisciplinary best interest decision was made for a fourteen day trial of NG feeding. Following this trial she remained at risk of aspiration and the decision was made to fit a PEG. She was subsequently discharged to a new placement.
A patient with mixed dementia was admitted with sepsis and delirium. He was noted to have no oral intake in the first 24 hours of admission. He had eaten normally with good appetite the week before.
The flowchart was used and a multidisciplinary best interest decision was taken for a fourteen day trial of NG feed. Oral intake improved gradually but after fourteen days he was still at risk of aspiration, the NG was removed with decision to risk feed. After NG removal, oral intake continued to improve and at time of discharge the patient was eating and drinking normally without risk of aspiration.
A patient with Alzheimer’s dementia was transferred from a community hospital owing to worsening delirium. She had previously been eating normally and had displayed normal appetite. She was diagnosed with pneumonia and given antibiotics. During her admission she was observed to have poor oral intake attributed to the acute infection and delirium.
Following use of the flowchart, a multidisciplinary MCA assessment was completed and best interest decision made for a fourteen day trial of NG feeding. After completing a course of antibiotics and tolerating a trial of NG feeding, the team agreed there had been no improvement in oral intake. It was agreed that she should be fed at risk and she was discharged from hospital with a palliative plan.
A patient with mixed dementia was admitted due to a cough, weakness and not eating and drinking for five days. She lived with family, had twice-daily care and mobilised with a frame. She ate finger foods little and often.
Use of the flowchart identified chest infection as a potentially reversible cause of the deterioration in her oral intake and as such, MCA assessment was completed. The best interest decision was for a trial of NG feeding with application for DOLS for use of mittens. The patient did not tolerate NG insertion while wearing mittens and the MDT then decided to risk feed. She subsequently deteriorated further and was discharged home palliatively.
What we concluded
Our review also demonstrated a high level of mortality in this cohort, regardless of the use of NG. This is likely due to the nature of dementia and co-existing clinical frailty. Our cases illustrate that no two patients living with dementia are the same and highlights the need for a patient-centred multidisciplinary approach to an often challenging ethical dilemma.
The MEHT flowchart (see below) has introduced a structured approach to aid clinical decision making, enabling us to comply with national guidelines while ensuring that patients are managed in accordance with current legislation.
Mid Essex Hospitals NHS Trust (MEHT)
Addendum to the Mid-Essex Hospital Services Pathway for People with Dementia who are not eating and drinking adequately
COLLATERAL HISTORY AND IDENTIFY BASELINE:
Malnutrition Universal Screening Tool (MUST) assessed within 12 hours of admission to hospital and completed weekly or more frequently for those at risk.
Research background nutritional history; e.g. weight history, dietary habits, likes/dislikes, usual food portions, assistance required with meals, *religious beliefs/needs? *Consider patient’s ability to communicate.
IDENTIFY & ADDRESS UNMET NEEDS: Constipation, Impact of Medication, Pain, Surgery, Nausea, Oral health, Infection, Dentures, Positioning, Minimise distractions, Depression. Treat delirium (refer to Delirium Pathway for Guidance).
COMMENCE INITIAL INTERVENTIONS: Monitor food/fluid intake accurately. Monitor amount of weight loss (weekly weights). Offer relatives mealtimes with the patient and open visiting. Use ‘Red Tray System’. Use coloured cups and plates. Review medication. Encourage to eat meals sitting in chair.
COMMENCE SECONDARY INTERVENTIONS: Consider referrals to Dietitian, Dementia Specialist/EAT and Nutrition CNS. Consider oral nutritional supplements, food fortification, snacks, *finger foods, texture modification. Consider if there may be a swallowing problem and if so refer to SALT
IS THERE AN ILLNESS THAT MAY IMPROVE WITH TREATMENT? Determine if IVI required. Consider if there is any potential for recovery i.e. does the patient have an illness that may improve with treatment?
COMPLETE MCA2 TO DETERMINE THAT NON-ORAL FEEDING TRIAL IS APPROPRIATE: Best Interests decision should include all relevant members of MDT (Drs, Nurses, SALT, Dietitian, Dementia Specialist and Nutrition CNS), relatives and the patient’s current and previous wishes, spiritual wishes and consider re-feeding syndrome. Consider DoLS if it is anticipated the patient may struggle to tolerate NG feeding. Consider mittens etc.
COMPLETE NON-ORAL FEEDING TRIAL AND MONITOR FOR IMPROVEMENT: Refer to Dementia Specialist / Elderly Assessment Team #6555 2557. If patient’s condition continues to deteriorate consider MCA2 to withdraw active treatment if no reversible illness.
CONSIDER LONG TERM NON-ORAL FEEDING IF TRIAL SUCCESSFUL: Only applicable if it can be evidenced this is in the patients’ best interests. Refer to Nutrition CNS #6555 1710
ESTABLISH AND AGREE NEW BASELINE WITH MDT, PATIENT AND FAMILY: Consider MCA2 regarding ceiling of treatment if inadequate oral intake.
CONFIRM POOR ORAL INTAKE IS SOLELY
RELATED TO DISEASE PROGRESSION: If it can be evidenced that there are no reversible illnesses complete MCA2 regarding withdrawal of treatment and inform patient and family of poor prognosis. Consider palliative discharge. Refer to Dementia Specialist / Elderly Assessment Team #6555 2557
FOR PATIENTS WITH IDENTIFIED SWALLOWING DIFFICULTIES CONSIDER AT RISK EATING AND DRINKING AND IMPLEMENT PROTOCOL: Consider / commence safest ‘at risk’ feeding and optimise intake, e.g. finger foods, food fortification, full fat milk
COMPLETE MCA2 TO DETERMINE THAT NON-ORAL FEEDING IS NOT APPROPRIATE: Best Interests decision should include all relevant members of MDT (Drs, Nurses, SALT, Dietitian, Dementia Specialist and Nutrition CNS), relatives and the patient’s current and previous wishes, spiritual wishes
AGREE NUTRITIONAL SUPPORT PLAN & DISSEMINATE TO COMMUNITY STAFF: Ensure all decisions made (including MCA2) are recorded on discharge summary and a copy of MCA 2 is provided to community SALT, Dietitian, Matron and District Nurse.
1. Mitchell SL. Advanced Dementia. N Engl J Med 2015;372:2533-40
2. Sampson et al. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev 2009;2:CD007209
3. NICE Guidance (CG42). Supporting people with dementia and their carers in health and social care 
4. Royal College Physicians. Practical Guide - Oral feeding difficulties and dilemmas 
5. British Geriatrics Society. Best Practice Guide - Dysphagia Management for Older People Towards the End of Life