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«Faculty for People with Intellectual Disabilities Dementia and People with Intellectual Disabilities Guidance on the assessment, diagnosis, ...»

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Guidance on their Assessment, Diagnosis, Interventions and Support 45 Switch from one z-drug to another only if there is an adverse effect directly related to I that particular drug.

Use the minimum effective dose.

I Use medication on an ‘as and when necessary’ basis (every second or third night if I required) rather than on a regular basis.

Do not continue hypnotics for longer than four weeks.

I Discuss the discontinuation with the person and carer, and taper/stop it very I gradually.

Warn the person and carer of withdrawal symptoms and rebound insomnia.

I Advise on adverse interactions with alcohol and other sedative agents.

I Do not use in hepatic failure, chronic respiratory diseases and people who have a I history of substance misuse.

Be mindful of the side effects including day time sedation, falls and sun downing I (confusional state in the evening).

Key points Sleep difficulties are commonly experienced in people with intellectual disabilities I as they get older and/or develop dementia.

Assessment should include ruling out co-morbid mental health problems, substance I misuse, physical health problems and poor sleep hygiene.

The management of sleep difficulties in dementia should be based on nonI pharmacological approaches including good practice of sleep hygiene.

Medication should only be used if other approaches have failed or risks are I significant.

NICE recommendations should be adhered to if pharmacological approaches are I used.

8.4 Gastrointestinal disorders Gastrointestinal disorders are common in people with intellectual disabilities. Gastrooesophageal reflux disease (GORD), constipation, dysphagia and nutritional issues are all found in people with advancing dementia and should be monitored. Disorders of the gastrointestinal tract can cause changes in behaviour due to pain or food refusal and so should be included in any analysis.

A swallowing assessment as part of the baseline investigation of dementia would be best practise. This is due to the fact that dysphagia (swallowing difficulties) and apraxia (purposeful movement difficulties) are both associated with feeding difficulties in people with dementia, but might not be the presenting feature.

Swallowing difficulty (with resulting aspiration) is a major risk for the development of aspiration pneumonia. Often, secretions are aspirated during sleep; however, a normal cough reflex and normal immune mechanisms protect the airways from repeated infections. As dementia progresses, however, this simple aspiration will extend to aspiration of food and drinks during eating making the chance of developing pneumonia much more likely.

Choking during eating usually starts with liquids because the swallowing of liquids requires the best coordination of the muscles involved. Choking can sometimes be prevented by 46 Dementia and People with Intellectual Disabilities switching from thin liquids to thick liquids, e.g. from milk to yogurt. This should be part of the assessment completed by a qualified speech and language therapist and or dietitian (see Section 14 – Eating and Drinking).

Apraxia results in inability to use utensils but people with dementia may be still able to feed themselves finger food. With the progression of dementia, individuals may ultimately be unable to feed themselves or drink without assistance. However, adequate nutrition can be provided by hand feeding using a modified diet that is adapted to the ability of the individual paying attention to their individual chew and to their swallowing difficulties.

Hand feeding can often be provided until the time when all physiological processes start to shut down.

At the point where food refusal starts to become an issue and where there are concerns about malnutrition, considerations turn to the use of nasogastric tube feeding or the insertion of percutaneous endoscopic gastrostomy (PEG) tube. The Cochrane review (Sampson et al., 2009) concluded that tube feeding does not prevent or improve pressure ulcers, does not reduce the risk of infections, does not improve functional status or comfort of the patient, does not decrease aspiration pneumonia (and could increase it) and does not prevent the consequences of malnutrition. Tube feeding should therefore be carefully considered and appropriately indicated. The most appropriate use of this treatment is where it is likely to be short term to allow an individual to recover from an acute illness.

Key points All people who have been diagnosed with dementia warrant a dysphagia assessment I and should have eating and drinking guidelines in place.

Eating and drinking guidelines should include the opportunity for ‘finger foods’ I in order to allow the individual to maintain their ability to feed themselves.

Nasogastric and PEG feeding are not associated with significantly improved I outcomes and should be carefully considered.

8.5 Infections People with dementia commonly succumb to a number of infections including, most commonly, urinary tract infection (UTI), respiratory tract infection, skin infection, gastrointestinal infection and eye infection.

These infections are almost an inevitable consequence of advanced dementia; the reason includes reduced immune responses. The risk of development of urinary tract infections is increased by incontinence (especially in women) and by urinary retention (in men).





Swallowing difficulties with aspiration increase the risk of developing respiratory infections and reduced physical activity increases the risk of urinary and respiratory infections, deep vein thrombosis and infected pressure ulcers.

Communication difficulties in people with intellectual disabilities and dementia further complicate the diagnosis of illness as they are even less likely to report cough, rash, gastrointestinal symptoms, and joint pain than people with intellectual disabilities alone.

Functional impairment is also an important factor because dependence in feeding and oral care is a significant factor in the development of aspiration pneumonia.

Guidance on their Assessment, Diagnosis, Interventions and Support 47 Ultrasound can be useful in the detection and future management of residual urine. This is usually the remit of the continence teams who are well equipped to manage these situations. The avoidance of internal urinary catheters, where possible, is an important prevention strategy for UTIs because the bladder is colonised with bacteria soon after the insertion of an indwelling catheter. Prophylactic antibiotics can seem like a tempting solution; however, this can lead to the development of antibiotic-resistant bacteria.

Strategies to prevent aspiration pneumonia include oral hygiene, avoidance of smoking and endotracheal intubation, and potentiation of the cough reflex. Bad dental hygiene is a risk factor for development of pneumonia. Oral care has been shown to decrease the incidence of pneumonia (and death) and the number of febrile days.

Key points People with dementia have a high rate of infection and so any change in I presentation should include an assessment for an infection.

Infections and the causes for these need to be addressed and, where possible, I changes should be made to prevent recurrence.

Where possible, steps should be taken to prevent infections rather than to treat I each as they arise.

48 Dementia and People with Intellectual Disabilities Section 9 – Conceptual understanding of the dementia process Conceptual understanding of the psychological and social consequences of dementia is essential for senior staff to guide timely decision-making about interventions and approaches to individuals/service developments. The social model (NICE/SCIE, 2006) proposes that whilst people with dementia have an impairment, they may be further disabled by the way they are treated by or excluded from society. The advantages of this

framework are that carers and staff will understand:

thta dementia is not the fault of the individual;

I that the focus is on the remaining skills rather than losses;

I that the individual can be fully understood (their history, likes/dislikes, etc.);

I the influence of an enabling or supportive environment;

I the key value of appropriate communication; and I opportunities for stress-free and failure-free activities.

I This means that the responsibility to continue to reach out to people with dementia lies with people who do not have dementia. Carers and staff need to change their approach to ‘go with’ the person and their continuing changes. Brawley (1997) concluded that ‘90 per cent of the catastrophic behaviours in dementia are induced by carers or the environment’.

9.1 Models of dementia Downs et al. (2006) show how different models, e.g. as a neurological condition; as a neuro-psychiatric condition; as a normal part of ageing; and seeing dementia from a person-centred perspective; can be used to understand dementia.

One approach to understanding dementia and its psychological consequences has been put forward by Buijssen (2005). He proposes two laws of dementia, and asserts that by understanding them, and their consequences, we have a framework to understand and respond to people appropriately.

Law 1: Law of disturbed encoding In this law, the person is no longer able to transfer information successfully from their short-term memory and store it in their long-term memory. This means that the person is unlikely to remember things that have just happened to them.

The main consequence of disturbed encoding is that the person is unable to form any new

memories for the things they experience or for things they are told. This means that:

• They experience disorientation in an unfamiliar environment.

• They experience disorientation in time.

• The person asks the same questions repeatedly.

• The person quickly loses track of conversations.

• The person is less able to learn anything new.

Guidance on their Assessment, Diagnosis, Interventions and Support 49

• The person easily loses things.

• The person is unable to recall people whom they have recently met.

• Appointments are quickly forgotten.

• The person experiences anxiety and stress.

Law 2: Law of roll-back memory Long-term memory contains all the memories that have been acquired starting with the most recent memories, and working back toward childhood memories. When dementia develops, the person will be less able to form any new memories after this time. At first their long-term memories will remain intact, but as dementia progresses, long-term memories will also begin to deteriorate and eventually disappear altogether. Deterioration of memory will begin with the most recent memories and will progress until only memories of early childhood remain, hence memory can be said to be ‘rolling back’.

The consequences of roll-back memory are:

• Loss of daily skills such as using kitchen appliances.

• Memory loss for events, beginning with the most recent, e.g. last holiday.

• Decreased social skills and increased inappropriate behaviour.

• Decreased vocabulary and inability to find words.

• Disorientation towards people, e.g. inability to recognise family and relatives.

• The person may begin to have ‘flashbacks’ and see people from their past.

• Self-care skills will begin to deteriorate.

• Changes in personality.

• The person believes that they are younger and that time has actually ‘rolled back’.

9.2 Understanding the process of change It is important that staff and family carers understand that dementia is a progressive disease, and that the skills, abilities and needs of the person will be constantly changing.

Alzheimer’s disease in people with Down’s syndrome can be thought about in three stages:

early stage, middle stage and late stage. The person’s cognitive ability will deteriorate across these three stages and their level of dependence will increase.

It is important to remember that the person may appear to move into the next stage, often because of an illness such as pneumonia or a urinary tract infection (UTI), and may return to the previous stage once the illness has been treated, although the recovery can take time. Therefore when there is a sudden decline, a physical health cause should always be considered and appropriate investigations undertaken.

Early Stage At this stage, the person is showing signs of decline from their usual level of functioning in

the following areas:

• Subtle changes in behaviour and mood.

• Performance at day placements deteriorate.

• Memory problems, particularly for recent events.

• Ability to learn new information is affected.

• Language and word finding problems.

–  –  –

Middle Stage

• Memory loss become more pronounced and the individual may forget personal information or the names of familiar people.

• Language problems become more evident.

• Confusion and disorientation around time, place and may have problems finding their way around familiar environments.

• Difficulties with and then loss of self care skills.

• More severe changes in personality and social behaviour, e.g. mood changes, inactivity or apathy, behavioural disturbances such as wandering, sleep problems, agitation, hallucinations and delusions.

• Problems with eating and drinking.

• Disturbed sleep patterns.

• Increasing incontinence.

Late Stage

• Myoclonus and epilepsy.

• Incontinence (bladder and bowels).

• Loss of eating/drinking skills.

• Problems with walking and balance, individuals become chair- or bed-bound.

• Problems with recognising people.

• Often require 24-hour care.

• Will become bedridden and inactive.

• Greater risk of infections, particularly pneumonia.

Deterioration of people with intellectual disabilities and dementia is not predictable.



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