© 2015

Wou

nd C

are P

eople

Ltd

36 JCN 2015, Vol 29, No 6

NUTRITION

Building on the work achieved with the ‘national dementia strategy’ in 2009 (Department

of Health [DH], 2009), which set out recommendations to improve dementia care services, in February 2015 David Cameron announced a follow-up to 2012’s ‘dementia challenge’ by outlining a long-term strategy focused on boosting research, improving care and raising public awareness about dementia (DH, 2015).

Dementia has been described as a syndrome occurring as a result of a disease of the brain, which is chronic or progressive in nature (World Health Organization, 1992), and while this may be an oversimplification it is true that in recent years awareness of dementia has grown as the condition has attracted more media headlines.

Practical nutritional measures in patients with dementia

This increased attention is warranted for a disease that in the UK alone affects an estimated 840,000 people, accounting for 7.1% of the population over the age of 65 (Alzheimer’s Society, 2014). The financial cost of dementia is also rising, with an annual price tag of £26 billion in the UK (Alzheimer’s Society, 2014).

The role of nutrition in dementia is complex, not necessarily due to the change in patients’ nutritional requirements, but more because of the disease’s presentation and the affect it has on activities of daily living. In this article, the author will discuss the practical approaches that community nurses — along with carers and families and those working in nursing or care homes — can take to manage nutrition in dementia.

BACKGROUND

People with dementia will often present with a range of symptoms that arise due to an impairment of several higher cortical functions, which include memory, thinking, comprehension, learning and judgement, among others.

The management of nutrition in people with dementia is complex as it involves weight loss due to cognitive and physical problems caused by the condition. There is a range of practical approaches that the community nurse can implement, but these must be adjusted to suit each person. Often, a large proportion of the community nurse’s time is spent supporting carers, family and friends who are looking after a relative who has dementia at home. This can be a demanding role and carers often experience physical and emotional fatigue. For those working with patients with dementia in nursing, residential and care homes, it is particularly important that staff are supported with strong leadership to provide a flexible approach to meal times and that suitable menu options are available.

KEYWORDS:Nutrition Mental health Dietitian Dementia Carer support

Edel McGinley

Edel McGinley, service lead for nutrition support, Ealing Community, London North West Healthcare NHS Trust

CausesThe causes of dementia are not fully understood but broadly it is thought to result from structural changes in the brain due either to cardiovascular incidents (strokes) and chemical changes that lead to loss of brain volume and a reduction in the number of neurones (Zarow et al, 2005).

SymptomsSome of the main symptoms of dementia include: Forgetfulness Poor concentration Confusion Difficulty with everyday tasks Hallucinations and delusions.

Within the term dementia there are also various types, including: Dementia with Lewy bodies: Lewy

bodies are tiny deposits of protein found in nerve cells, which are poorly understood but are thought to affect chemical messengers in the brain (mainly acetylcholine and dopamine) and the connections between nerve cells

Vascular dementia: caused by impaired blood supply to the brain caused by a series of small strokes, for instance

Frontal lobe dementia: caused when nerve cells in the frontal and/or temporal lobes of the brain die, changing the pathways that connect them. Over time, the brain tissue in the frontal and temporal lobes may shrink

Dementia in Parkinson’s disease: dementia does not affect everyone with Parkinson’s disease but it is more common

Alzheimer’s disease: a physical disease that affects the brain through a build-up of proteins that form structures called ‘plaques’ and ‘tangles’. These damage the connections between nerve cells and eventually lead to

© 2015

Wou

nd C

are P

eople

Ltd

JCN 2015, Vol 29, No 6 37

NUTRITION

swallow and requiring assistance at meal times. This can often lead to anxiety around meal times as well as depression (Sachs et al, 2004; Palecek et al, 2010).

As a result of these problems, the patient can often lose weight, not due to the disease itself but to a decrease in energy and protein intake (Prentice et al, 1989). However, this can also be due to excessive walking/wandering, which can result in an increased need for calories (Rheaume et al, 1987; Keady et al, 2007). The management of patients who walk excessively can be difficult. One option is sedation, which increases the amount of sleep but can also affect mealtimes. However, music therapy and other forms of exercise have been shown to reduce wandering in people with dementia (Robinson et al, 2006).

It is important that community nurses consider the naturally occurring ageing process and its effect on nutrition alongside the more specific effects of dementia, particularly as the majority of diagnoses are made in the over-65s. Webb and Copeman (1996) identified four issues that are important to consider within the older population: Fluid balance and renal function Skeletal changes Physical fitness and strength Changes in immune system.

MalnutritionSome of these changes (or a combination) can result in decreased appetite, thereby reducing dietary intake. With older adult patients it is always important to consider the possibility of malnutrition, which in the author’s experience, can result in increased mortality, including: Increased risk of infection due to a

depressed immune system, further exacerbated by the normal decline in immunity accompanying ageing

Increased risk of pressure ulcers due to loss of subcutaneous fat and reduced mobility

Reduced muscle mass in old age (sacropenia) can affect lung function, reducing people’s ability to cough properly and increasing the risk of respiratory infections

Changes to lean muscle and fat mass results in decreased

the death of nerve cells and the loss of brain tissue.

Alzheimer’s disease is the most common form of dementia and accounts for up to 75% of cases (Qiu et al, 2009). Main features include memory loss and difficulty in recalling words (in the early stages) (Taylor and Thomas, 2013), which can affect daily tasks such as shopping, managing finances and following directions.

Vascular dementia is the second most common form with a similar presentation to Alzheimer’s disease but also including depression, anxiety and apathy (O’Brien et al, 2003).

Dementia with Lewy bodies accounts for 10% of all cases diagnosed (Matsui et al, 2009). It has a similar presentation to Parkinson’s disease, including trembling limbs, shuffling gait and reduced facial expression. Dementia with Lewy bodies has similar features to Alzheimer’s in regard to memory and cognitive changes, but a marked difference in terms of visual hallucinations, recurrent falls, disturbed sleep and/or nightmares (McKeith et al, 2005).

Frontal lobe dementia is the least common form and features behavioural and personality changes including a lack of inhibitions, poor empathy and difficulty in planning.

Eating habits may change, with overeating and a preference for sweet foods.

It is important that clinicians know which type of dementia the patient has, as the presentation can be different in each and the approach needs to be individualised for each patient.

DEMENTIA AND NUTRITION

The effects of dementia on nutritional intake and nutritional status are considerable. As described above, the diagnosis of dementia varies according to behavioural, emotional and physical changes, each of which can have an impact on the patient’s eating habits and food and fluid intake.

In the author’s clinical experience, the effect of dementia on nutrition will vary from person to person as well as being affected by the stage of the their dementia (Table 1). In the initial stages, family and carers may report the patient having difficulty with shopping, cooking and storing food, for example forgetting to eat a meal which they have already prepared, eating food that is past its sell-by date, and/or changes in dietary preferences.

As the condition advances, patients may experience difficulty with eating, for example pooling food in their mouths, forgetting to

Table 1: Reasons why people with dementia may turn down foodDepression Loss of appetite can be a sign of depression, which is common in

people with dementia

Communication People with dementia may have difficulty communicating when they are hungry or conversely that they do not like a particular food. This may be expressed in behaviour such as refusing to eat or retaining food in their mouth

Pain People with dementia may have dental or mouth pain that they cannot express, including problems with dentures, gum disease or abscesses

Tiredness Tiredness can cause people to avoid cooking or give up eating halfway through a meal. It can also lead to problems with concentration or coordination when eating

Medication Certain medications or changes to medication can affect appetite changes

Physical activity If the patient is inactive during the day, this can suppress the appetite; similarly, too much activity through pacing or constant fidgeting can use extra calories that will need to be replaced

Constipation Constipation can lead to people feeling bloated or nauseous and thereby less likely to want to eat. Activity, fibre-rich foods and fluids can help prevent constipation

Source: Alzheimer’s society: www.alzheimers.org.uk

© 2015

Wou

nd C

are P

eople

Ltd

38 JCN 2015, Vol 29, No 6

NUTRITION

body strength, thereby reducing mobility and increasing the risk of thromboembolism.

All of these factors can malnourish older people, reducing their ability to heal and recover from infections, and potentially increasing the need for medication and extended stays in hospital. It is important that community nurses identify those patients at risk of malnutrition using a validated nutritional screening tool, e.g. the Malnutrition Universal Screening Tool (MUST) (British Association for Parenteral and Enteral Nutrition [BAPEN], 2003), which has five steps:

Step 1: measure height and weight to get a body mass index (BMI) score using chart provided. If unable to obtain height and weight, use the alternative procedures shown in the guideStep 2: note percentage of unplanned weight loss and score using tables providedStep 3: establish acute disease effect and scoreStep 4: add scores from steps 1, 2 and 3 together to obtain overall risk of malnutritionStep 5: use management guidelines and/or local policy to develop care plan.

It is also important to perform regular weight checks on any patient with dementia who is suspected of losing too much weight.

Symptoms of dementia The patient’s individual dementia symptoms can also impact directly on nutrition, for example (Addicot, 2014):

Sensory impairment: such as loss of smell or taste, or changes in taste Refusing food due to depression, confusion or paranoia Changes in bowel habit such as constipation or loose stools Changes in mental state, e.g. the patient may become more irritable or aggressive around mealtimes Physical difficulties with chewing or swallowing Ill-fitting or missing dentures The patient may require assistance at meal times Patients may also have difficulty concentrating at meal times and

be easily distractedIncreased wandering may mean that the patient misses mealtimes.

A number of practical strategies, which will vary from patient to patient, can be employed to counteract the above. A systematic review by Hanson et al (2011) demonstrated that high-calorie supplements, modified foods and assisted feeding can support weight gain in individuals with dementia.

In the case of patients being cared for in their own homes, nurses should consider the following:

Engage with social services to ensure an adequate care package is in place Encourage family/carers to keep a reserve of foods that do not require cooking, particularly in the early stages of dementia where the patient is still self-caring. These include cereal, cheese and crackers, preserved meats, fruit, and yogurts Encourage patients and families to use ‘meals-on-wheels’-type services for hot mealsConsider local lunch clubs or day centres Promote the social element of eating and its importance, such as encouraging the family to visit at meal times In the author’s clinical experience, encouraging food-fortification — adding full-fat milk to cereal; spreading toast with butter and jam; adding cream to rice pudding; and adding cheese to soups — can be helpful.

For those community nurses working with patients with dementia in nursing, residential or care homes, management strategies can include:

Liaising with local dietitians to ensure access to a high-calorie, high-protein menu Developing a ‘finger-food’ menu for patients who are too distracted to sit for long periods at meal times, e.g. chips, small sandwiches, biscuits, crackers, cheese, etcProviding access to specialist feeding aids such as deep-lipped plates (designed to keep food on the plate), adaptive cutlery, non-slip place mats and large-handled mugs

Ensuring there is regular training on the links between nutrition and dementia for all staff, including catering staff Implementing a ‘protected meal times’ policy that focuses on a calm environment at mealtimes.

In the author’s clinical experience, the management of advanced dementia in particular can benefit from a ‘different’ approach. Ideas to consider include:

Offer small nutritious meals and drinks at regular intervalsAllow additional time for meals Assist patients who are not fully alert or may be anxious at meal

TIPS FOR INCREASING NUTRITIONAL INTAKE

There are many ways to help ensure that patients with dementia increase their nutritional intake:

Regular snacks or small meals are better than set mealtimesFood should look and smell appealing with a variety of tastes, colours and smellsLook for opportunities to encourage patients to eat, with snacks with afternoon tea or late-night suppers for exampleProvide food that patients actually likeSmall and regular portions often work bestFood that has gone cold is less appetising — smaller portions keep food warm for longerSoft foods such as scrambled egg or mashed potato can help with chewing or swallowingSeek advice from a dietitian or speech and language therapist if considering pureed food to make sure it is still nutritiousEncourage patients to help at mealtimes, preparing food or laying the table, for example.

Source: www.alzheimers.org.ukC

redi

t: ep

sos

D@

flick

r

© 2015

Wou

nd C

are P

eople

Ltd

JCN 2015, Vol 29, No 6 39

NUTRITION

Reduce possible agitation around mealtimes by ensuring that the environment is calm and conducive to eating, for example, reducing distractions by turning off the television and ensuring quiet rather than loud music is playing (Cohen-Mansfield et al, 2009)Patients with dementia may have difficulty recognising cutlery at meal times and/or difficulty coordinating cutlery. Gentle prompting and support such as directing their hands to the cutlery at the start of the meal can be helpfulServing food on brightly coloured plates rather than white plates can draw attention to the meal Bayer and Reban (2004) highlighted that cutting food into smaller pieces before serving can be helpfulIf a patient wanders away from an unfinished meal, the community nurse should not assume that they dislike the food or have had enough — they may benefit from verbal prompting to come back to the table and/or by being guided towards an empty seat. If this does not work, then it is important to revisit the patient’s dietary requirements, perhaps moving them onto finger-foods to

times, for example providing support with their posture, using cutlery or in some cases actual feeding (Table 2)Use specialist feeding aids (as described above) to help maintain patients’ independence at mealtimesFor those patients who wander or become easily distracted at mealtimes, consider the use of a ‘finger-food’ menu (as mentioned above)Make use of times of the day such as early mornings when patients may be more alert and able to concentrate on meals, Consider cooked breakfasts, such as scrambled eggs on toast to increase calorie and protein intake Ensure regular access to fluids such as water, juice, squash, ‘milky’ drinks, tea or coffee and regularly prompt patients to drink.

It is important that those community nurses involved in the care of patients with dementia also consider strategies that will specifically help at meal times. In patients with dementia, particularly advanced dementia, overcoming a poor dietary intake requires more than diet advice and calorie supplementation — it may also require consideration of the patient’s physical deterioration; environment and/or particular food types. For example, some patients may become sensitive to foods with mixed textures, e.g. cornflakes with milk; chicken noodle soup; stew with

chopped potatoes and meat. It may be worthwhile trying softer single texture food such as mashed potato with cream and butter and porridge-type cereals with whole milk and added jam or honey (Kindell, 2002).

Similarly, community nurses should observe for any visible changes or reported changes in the patient’s ability to swallow. Dysphagia can be a result of behavioural, sensory, or motor problems (or a combination of these) and is common in individuals with neurologic disease such as dementia. Robertson (1996) highlighted that the issue of dysphagia in dementia can be described as ‘an eating problem, often accompanied by a swallowing problem’, i.e. knowing what, when and how to eat in addition to having a delayed or absent swallow reflex.

Often, the challenge that arises in the middle-to-late stage of dementia is the patient ‘pocketing’ food in the mouth and failing to chew sufficiently, which results in an increased risk of choking (Wasson et al, 2001). Kindell (2002) advised that all patients presenting with a change in their swallowing ability should be referred directly and promptly to local speech and language services for an assessment and advice on appropriate food texture modifications and fluid consistency.

On a day-to-day basis, strategies that community nurses can use specifically at mealtimes include:

Answer the following questions about this article, either to test the new knowledge you have gained or to form part of your ongoing practice development portfolio.

1 – Can you explain how the community nurse can recognise poor nutrition?

2 – What is the main role of nutrition in dementia?

3 – What are some of the key nutrients involved in dementia?

4 – How might certain food preparations aid dementia?

5 – What are the benefits of providing appropriate dietary advice to patients with dementia?

Five-minute test

Table 2: Feeding techniquesStaff should aim to allow the patient to retain independence and control over eating and drinking for as long as is possible

Place patient’s hand on the spoonDemonstrate to the patient how to eat or undertake ‘hand-in-hand’ feedingEncourage chewing by touching the person’s tongue with a spoon or moving their chinEncourage swallowing by gently stroking the person’s throat Give verbal prompts using simple clear instructionsIncrease the time allowed for feeding to avoid choking and allow adequate time between mouthfuls

Ensure correct positioning for patient and staff member

Ensure staff position themselves comfortably and correctly, i.e. seated and at right angles to, and in front of, the patient to facilitate eye contact and visual cues from the foodEnsure patient is seated in an upright position

Environment Where possible, ask staff/family members who have previously been successful in feeding someone ‘difficult’ to helpAllow the patient the opportunity to see and smell the food before placing the spoon in their mouth

© 2015

Wou

nd C

are P

eople

Ltd

40 JCN 2015, Vol 29, No 6

NUTRITION

ensure that their dietary intake is not compromised (Kindell, 2002).

End of lifeBaines (2000) identified that towards the end of life, patients with dementia may express very little interest in food and drink and this can lead to considerable anxiety among caregivers, including nurses, carers and relatives (Baines, 2000). Research in this area is limited and it is difficult to advise on general strategies or recommendations, however Wasson et al (2001) suggested the following: Consider whether any disinterest

and/or decline in eating is concordant with an overall deterioration

Exclude the possibility of infections that could be affecting the patient’s cognitive ability and desire to eat, i.e. urinary tract infections — these may require referral to the GP

If it seems that a patient may be close to dying it is still appropriate to offer small amounts of food and fluids, neither giving up too easily nor trying with undue force.

Each attempt to feed the patient should be written-up in their notes. If death seems imminent, any decision to stop offering food should be discussed with the patient’s family/next of kin and the wider healthcare team and recorded in the notes (British Medical Association [BMA], 1999).

CONCLUSION

The management of nutrition in dementia is complex due to the range of practical approaches and the need to adjust these to each person. Often, a large proportion of the community nurse’s time is spent supporting carers, family and friends at home. It is important to consider their feelings when suggesting any of the strategies discussed above, as they may feel that they are already incorporating them in the patient’s day-to-day life.

In the author’s clinical experience, it is important to focus on 2–3 key elements of advice around nutrition and try to be present for at least one mealtime to appreciate the challenges experienced by families and carers — this will help identify suitable strategies.

For those working in nursing, residential and care homes, it is important that staff are supported with strong leadership to provide a flexible approach to meal times and that suitable menu options such as finger-foods, high-calorie meal plans and nourishing drinks are available for patients with dementia. JCN

REFERENCES

Addicot P (2014) Dementias. In: Gandy J (ed). Manual of Dietetic Practice. Fifth edition. Wiley Blackwell, Oxford: 637–41

Alzheimer’s Society (2014) Dementia UK: Update. Second edition. Alzheimer’s Society, London

Baines MJ (2000) Symptom management and palliative care. In: Evans JG, Williams TF (eds). Oxford Textbook of Geriatric Medicine. Oxford University Press, Oxford: 1113–26

BAPEN (2003) Malnutrition Universal Screening Tool. Available online: www.bapen.org.uk/pdfs/must/must_full.pdf (accessed 23 November, 2015)

Bayer A, Reban J (2004) Alzheimer’s disease and Related Conditions. MEDEA Press, Czech Republic

BMA (1999) Withholding and Withdrawing Life-prolonging Medical Treatment. BMJ Publishing, London

Cohen-Mansfield J, Dakheel-Ali M, Marx M (2009) Engagement in persons dementia: the concept and its measurement. Am J Geriatr Psychiatr 17(4): 299–307

DH (2009) Living Well With Dementia: a national dementia strategy. Available online: www.gov.uk/government/publications/living-well-with-dementia-a-national-dementia-strategy (accessed 23 November, 2015)

DH (2015) PM launches new phase of Britain’s fight against dementia. Available online: www.gov.uk/government/news/pm-launches-next-phase-of-britains-fight-against-dementia (accessed 23 November, 2015)

Hanson LC, Ersek M, Gilliam R, Carey TS (2011) Oral feeding options for people with dementia: a systematic review. J Am Geriatr 59(3): 463–72

Keady J, Clark CL, Page S (2007) Partnerships in Community Mental Health Nursing and Dementia Care: Practice Perspectives. Open University Press, Oxford

Kindell J (2002) Feeding and Swallowing Disorders in Dementia. Speechmark Publishing, Milton Keynes

Matsui Y, Tanizaki Y, Arima H, et al (2009) Incidence and survival of dementia in a general population of Japanese elderly;

the Hisayama study. J Neurol Neurosurg Psychiatr 80(4): 366–70

McKeith IG, Dickson DW, Lowe J, et al (2005) Diagnosis and management of dementia with Lewy bodies: third report of the Dementia with Lewy bodies consortium. Neurology 65(12): 1863–72

O’Brien JT, Erkinjuntti T, Resiberg B, et al (2003) Vascular cognitive impairment. Lancet Neurol 2(2): 89–98

Palecek EJ, Teno JM, Casarett DJ (2010) Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Am Geriatr Soc 58(3): 580–4

Prentice AM, Leavesley K, Murgatroyd PR, et al (1989) Is severe wasting in elderly mental patients caused by an excessive energy requirement? Age Ageing 18: 158–67

Qiu C, Kivipelto M, Von Strauss E (2009) Epidemiology of alzheimer’s Disease; occurrence, determinants and strategies towards intervention. Dialogues Clin Neurosci 11(2): 111–28

Rheaume Y, Riley M, Volicer L (1987) Meeting nutritional needs of Alzheimer’s patients who pace constantly. J Nutr Elderly 7: 43–52

Robertson C (1996) Dysphagia in dementia. Australian Communication Quarterly Spring: 31–3

Robinson L, Hutchings D, Corner L, et al (2006) The effectiveness of non-pharmacological interventions to prevent wandering in dementia. In: NIHR Health Technology Assessment programme: Executive Summaries. NIHR Journals Library, Southampton

Sachs GA, Shega JW, Cox-Hayley D (2004) Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med 19: 1057–63

Taylor JP, Thomas A (2013) Alzheimer’s disease. In: Denning T, Thomas A (eds). Oxford Textbook of Old Age Psychiatry. Second edition. Oxford University Press. Oxford: 431–55

Wasson K, Tate H, Hayes C (2001) Food refusal and dysphagia in older people with dementia. Int J Pall Nurs 7(10): 469

Webb GP, Copeman J (1996) The Nutrition of Older Adults. Arnold Publications/Age Concern, London

World Health Organization (1992) The ICD-10 Classification of Mental and Behavioural Disorders: Clinical descriptions and diagnostic guidelines. WHO, Geneva

Zarow C, Vinters HV, Ellis WG, et al (2005) Correlates of hippocampal neuron number in Alzheimer’s disease and ischemic vascular dementia. Ann Neurol 57(6): 896–903