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Addressing nutritional needs in end-stage dementia

Gaye Kyle
RGN BA(Hons) Dip Ed MA
Independent Lecturer Recognised Teacher
University of Ulster

Dysphagia is common at the end of life and may cause pneumonia, dehydration and malnutrition. Gaye Kyle looks at some of the barriers to end-of-life dementia care, with particular reference to the provision of food and fluid

As a consequence of increasing life span, the incidence and prevalence of dementia has increased. There are now estimated to be over 750,000 people with dementia in the UK and numbers are expected to double in the next 30 years.1 Correspondingly, the number of carers (family and friends) involved in regular support is likely to increase.

Although some patients with dementia will die from other causes, evidence suggests that dementia is the fourth leading cause of death in the western world.2 It is difficult to determine the exact prevalence of deaths due to dementia because death certificates often cite complications of the disease as the cause.

At the end of life, patients with dementia may have many medical problems related to the functional impairment of the disease. Dysphagia (swallowing difficulties) is one of the most common complications. It is estimated that just under half of all patients in nursing homes with dementia experience some degree of dysphagia.3 The prevalence of dysphagia then rises to 70% in those individuals with advanced dementia.4

Dysphagia develops in almost all patients with neurological degenerative disease. The high prevalence of dysphagia among individuals with dementia is the result of age-related changes to sensory and motor function, in addition to those produced by neuropathology. Patients with end-stage dementia with dysphagia are at high risk of developing aspiration pneumonia, dehydration and malnutrition. These issues pose practical, ethical and legal dilemmas for community nurses, care staff in nursing homes and family carers.

Dementia can be thought of as a chronic, progressive neurological condition for which there is no cure. The World Health Organization states that everyone with a progressive illness has a right to palliative care.5 Therefore, given the progressive nature of dementia one would assume that a palliative care approach, where comfort and quality of life are paramount, would be inherent in all dementia nursing care; yet, the end-of-life care needs of people with dementia and their families have largely been neglected.6

The Department of Health acknowledged the importance of improving and standardising end-of-life services for all by developing the End of Life Strategy.7 In addition, both palliative and dementia care are included in the Quality and Outcomes Framework for the GP contract.8 The National Dementia Strategy sets objectives to improve the quality of care in care homes and end-of-life care for people with dementia and their families.9 Skills for Care and Skills for Health identify four core competencies for effective end-of-life care to support workforce development, training and education.10 These are:

  • Communication skills - being able to listen as well as talk, and being sensitive to individual needs, taking into account those of the family as well as the patient.
  • Assessment and care planning - ensuring the assessment is holistic, making use of different assessment tools and regular reassessment.
  • Symptom management (maintaining comfort and wellbeing) - understanding symptom management and working in partnership with the patient/family while recognising cultural sensitivities.
  • Advance care planning - being able to understand and communicate with families and friends about advanced care planning.

The four core competencies for effective end-of-life care will form the basis of the rest of this article.

Communication skills
Dementia is associated with complex needs, especially in the later stages, and it can have a devastating effect on the individual, their family and friends. Care needs often challenge the skills and capacity of carers, especially when normal everyday activities decline.

Food and drink are fundamental to living. Consequently, observing individuals struggling with eating and drinking not only poses professional difficulties but also raises emotional issues for the individual and their family. Effective communication with people with dementia about end-of-life care offers one of the biggest challenges at this difficult time, so any discussions need to be undertaken sensitively, preferably before the terminal phase is reached.

Evidence suggests that a person's ability to feel and express emotion is intact long after the ability to use words to express ideas coherently is lost, so all communication and questioning should continue to be sensitive to the individual's needs.11 Communication becomes more difficult when patients have severe receptive and expressive problems. Poor concentration and poor memory add to these difficulties. In such situations, communication with the family is vital.

Such discussions provide an ideal opportunity to talk about medication as problems with taking medication can be indicative of a swallowing difficulty. This can lead to non-compliance as patients and or their carers are worried about choking. Tablets should never be routinely crushed unless a community pharmacist advises that the medication is not compromised by the crushing, and that crushing the medication is deemed to be in the patient's best interest.12
Patients with dementia often refuse to take their medication by clamping their mouth shut or spitting tablets out once the medication is in their mouth. This has led to the practice of ensuring the patient receives their medication by covert administration. Covert medication should only be carried out as a last resort when all other methods of administration have been unsuccessfully tried and discussed with carers. The Nursing and Midwifery Council (NMC) gives clear guidelines on covert medication.13 The medicine must be necessary to:

  • Save life.
  • Prevent deterioration.
  • Ensure an improvement in the patient's physical or mental health.

Assessment and care planning
All healthcare workers should be able to recognise the early signs and symptoms of mild-to-severe dysphagia to offer management options and prevent the risks mentioned previously.14 Enquiring about and observing swallowing difficulties should be central to the nursing assessment of all older people with dementia. The National Institute for Health and Clinical Excellence (NICE) quality dementia standards state clearly that patients who develop symptoms, which give them distress should be offered assessment at the earliest opportunity.15

The community nurse is in a key position to identify swallowing difficulties and act proactively, thus preventing potential risks from dysphagia. For signs of a disordered swallow see Box 1.

[[Box 1 Dysphagia]]

Multidisciplinary team assessment ensures that optimal strategies are developed and tailored to each individual and their carer needs. The team should include the patient and carer, the community nurse team, doctors in both primary and secondary care, possible dysphagia specialist (if available), dietitian, speech and language specialist, pharmacist, physiotherapist, occupational therapist and specialist palliative care nurse or Admiral nurse. Admiral nurses are specialist mental health nurses specialising in dementia. They work collaboratively with other professionals and with family carers and people with dementia in the community.

Symptom management
Once dysphagia has been diagnosed and assessed then an individualised nutritional intervention that encourages patients to eat and drink independently for as long as possible is of maximum importance. Alternative routes for medication are available and should be considered, such as transdermal, rectal or injectable.

However, many patients with dementia will find such routes intolerable and distressing. If the patient can manage oral medication consider changing capsules or tablets to liquid or dispersible preparations. Liaising with the community pharmacist and general practitioner will provide the patient with the most suitable formulation of medicine. A comprehensive list of products available in liquid or dispersible form can be found online (
It is also important, if the patient is responsive, that practical advice is given on how to swallow. Rather than tipping the head backwards to allow food to drop backwards towards the back of the mouth, which narrows the oesophagus, the patient should be encouraged to drop their head and look down as this widens the oesophagus and facilitates the swallowing mechanism.

Evidence suggests that patients who require assistance with eating have a significant risk of developing aspiration pneumonia.16 However, many patients with dementia have dyspraxia making independent feeding impossible. In some care homes a "red tray" scheme has been identified as a useful strategy to help identify those clients experiencing difficulties with swallowing.17

Feeding a person with dysphagia is a skilled procedure. The
environment should be peaceful, the atmosphere calm and quiet without distractions. Durnbaugh et al found that by eliminating distractions individuals with dementia improved their nutritional and calorific intake.18 Assistance with feeding should be provided in an unhurried manner by someone sitting close. Patients with dementia can take twice as long to complete a meal as those patients without dementia.3

Snacks should be offered throughout the day and wherever possible encourage six small meals rather than three larger meals a day. Many patients with dementia experience anosmia, a diminished sense of smell, which affects the taste of food. This affects the normal physiological drivers of appetite. Food offered should, therefore, be spicy, sweet or sour and offered in an attractive way to maximise sensory input. Food thickeners can be used to change the consistency of food and fluids, in order to change bolus movement through the oral and pharyngeal phases of swallowing. There is some debate whether thickened fluids provide adequate fluid intake.3 Patients with severe dysphagia may require a puréed diet, although it is often difficult to maintain a high protein content with puréed food.

If adequate intake cannot be achieved orally then the decision to feed artificially via a fine bore nasogastric tube or by a percutaneous endoscopc gastrostomy (PEG) tube may be made, especially in those with advanced dementia. The decision to commence artificial nutrition is emotive and controversial. Often family members and healthcare workers are concerned about "starving to death" frail older people with advanced dementia. Consequently, they are attracted to the perceived practical benefits of tube feeding. However, artificial feeding is not without risks and the decision to initiate it should ideally be based on the informed views of the patient.

Nasogastric tubes are not well tolerated by patients with
dementia and despite the large number of people with dementia receiving a PEG intervention there is insufficient evidence on the perceived benefits.19 In people with dementia, artificial hydration and feeding when compared to hand feeding has no evident benefits in terms of survival.19-21
Furthermore, artificial feeding does not reduce the risk of aspiration pneumonia, increase physical function and enhance quality of life.19,22,23 Despite this evidence up to 44% of people with dementia die with feeding tubes in situ.24
Interestingly, the Alzheimer's Society does not consider the use of PEG tube feeding as best practice in advanced dementia.25 Arguably, taking time to hand feed a patient carefully with dementia provides a preferable alternative by promoting both comfort and dignity to the patient.

Advance care planning
Advanced care planning can provide patients with a sense of being in control, but this is not always feasible in advanced dementia. The National Dementia Strategy conveys the message of "living well" and "dying well" with dementia.9 This mirrors the ethos of palliative care, which affirms life and recognises death as a natural process. Advance care planning supports the co-ordination of care across community, voluntary and secondary care services.

Much of advanced care planning link in with the recommendations and priorities set out in the end-of-life care tools, eg, the Liverpool Care Pathway for the end of life and the Gold Standards Framework. However, there are challenges when using such end-of-life tools for people with advanced dementia.26 The failure to diagnose dying in advanced dementia together with a complex dying trajectory are seen as barriers to using end-of-life tools in people with advanced dementia.

NICE recommends that practitioners discuss such issues with a person with dementia while they still have the mental capacity so that advanced planning of care can be in the patient's best interest.27 There is, however, often little or no discussion regarding end-of-life wishes with the person with dementia before loss of mental capacity so the family's views regarding the likely wishes of their relative are the only point of reference in advanced care planning.

The Mental Capacity Act (2005) provides a legal framework for health care professionals to act in the best interest on behalf of individuals who lack the mental capacity to make decisions competently regarding their care.28 Patients with dementia now have the right to have their autonomy protected by choosing a surrogate decision maker and by writing an advance statement to make their wishes and thoughts on their end-of-life care known.

Those involved in advanced care planning must be aware of the challenges raised when a patient with dementia wishes to make an advanced care statement about for example, to refuse nutritional and fluid support. The palliative care approach to decision making encourages respect for the patient's wishes and honest discussion. However, the decisions concerning assisted nutrition and hydration raise questions that can be moral, religious and cultural. Decisions on whether to withhold or commence artificial nutritional/fluid support must be considered very carefully. Evidence of the benefits, burdens and risks must be weighed up against providing an intervention that may in turn prolong the dying process.

End-of-life care guidelines for advanced dementia are still in their infancy and this is a challenging area for nursing. Effective communication between healthcare professionals and families is critical to minimise the risk of conflicting opinions over end-of-life care. Decision-making concerning the appropriate use of artificial hydration/nutrition and route of medication need to be fully discussed with the immediate family and care providers to ensure all decisions are in the patient's best interest and fully understood by all those involved in the care.

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