Support the interests, rights and needs of people with disabilities with pervasive age-related changes, including people with dementia
Respond appropriately to physical, psychological and social changes in people with disabilities who are ageing and report uncharacteristic behaviours that may be the effect of progressive/pervasive conditions 3
Increased health needs associated with ageing 3
Increased mental health needs 11
Social changes related to ageing with a disability 18
Reporting uncharacteristic behaviour 20
Monitor and record signs of dementia and other progressive conditions that may have an adverse effect on the health of people with disabilities who are ageing 22
Characteristics of dementia 23
Identifying symptoms of dementia 23
What are the symptoms of dementia? 24
A pathway for responding to signs of dementia 24
Cognitive symptoms of dementia 26
Physical symptoms of dementia 38
Identifying symptoms of dementia 40
Planning for future needs in relation to dementia 40
Dementia care approach 41
Life activities and dementia 51
Monitor and record signs of dementia and other conditions 52
Example of documentation 53
Review 56
Check your progress 57
Feedback 57
Additional resources 59
Books 59
CD-ROM 60
Internet 60
Appendix 1: Checklist of changes in communication skills associated with dementia 61
Appendix 2: Checklist for symptoms of dementia 64
Appendix 3: Form for documenting changes over time—functional skills and dementia 67
Appendix 4: Form for documenting range of life skill areas 68
Appendix 5: Form for documenting changes in functional living skills 70
Appendix 6: Form to document strategies that have been helpful 72
Respond appropriately to physical, psychological and social changes in people with disabilities who are ageing and report uncharacteristic behaviours that may be the effect of progressive/pervasive conditions
People with a disability who are ageing can experience a wide range of changes in physical, psychological and social aspects of their lives. Sometimes these things manifest as physical symptoms (ie changes in the body) and sometimes as changes in behaviour. If disability support workers are aware of the possibility of such changes and are alert when observing people with a disability as they get older, some of the difficulties associated with ageing can be alleviated. This in turn can improve the health, quality of life and wellbeing of the person with a disability. This section gives information relating to some of the changes that may occur in physical health, psychological status or social interactions, and describes a number of strategies for responding to such changes.
Increased health needs associated with ageing
With the advent of improved health services, nutrition and support, people with lifelong disabilities are living longer than previously and are enjoying improvements in health into their later years. However, people with a disability are still more likely to experience age-related changes at a younger age than people in the general population. This includes age-related illnesses such as heart disease, arthritis and sensory and/or cognitive decline. It is therefore important to be aware of the many changes that could impact upon successful ageing, the person’s ability to ‘age in place’ (ie in their own home environment), and his or her quality of life and wellbeing.
Increased health risks
People with a disability have increased death rates, enter hospital more often, and need to see their doctors more often. They are more likely, as a result of their disability, to have sensory impairment, to have reduced mobility, to have epilepsy and experience pain than people in the general population.
At younger ages, people with some types of disability experience more health problems compared to the general population. For older people with a disability, the types of medical disorders are similar to the general population but occur earlier in the lifespan as well as more often. In particular, people who are ageing with an intellectual disability have increased rates of incontinence, hypertension (high blood pressure) and cardiovascular disease, immobility, deafness, and arthritis. People with Down Syndrome experience a higher incidence of thyroid disorders, heart disorders, dementia and sensory impairments (hearing and vision).
Risk factors for health problems
Risk factors for ill health in older adults with a disability are related not only to the underlying genetic make-up of the person (eg related to a particular syndrome or category of disability) but also to environmental factors. It is important to consider the following factors and take steps to address these areas as needs in older people with a disability.
Nutrition
There is a high prevalence of obesity among populations of people with a disability. Obesity is a particular risk for people with Down Syndrome. Conversely, some adults with a disability and swallowing disorders can have health problems related to being underweight and under-nourished. Under-nourishment can also be related to specific deficiencies in diet and metabolic disorders associated with particular syndromes or disorders. It is important that disability support workers are aware of general principles of nutrition in older people, and of nutritional needs of individuals relating to their particular disability. There is now a lot of public information available about healthy eating, for both the general population and for older Australians. See the resource section at the end of this reader for information on this.
Level of physical activity
Adults with cerebral palsy and adults who are less inclined to be involved in physical activity are at risk of developing illness related to poor physical health associated with insufficient exercise.
There are several benefits to a person with a disability being involved in higher levels of physical activity, and these include improvements in mental health, particularly depression and reduced levels of aggression.
Lack of physical activity combined with unemployment can result in loss of physical fitness, boredom and also, intensify other mental health disorders.
Barriers to a person’s participation in physical exercise include difficulties providing sufficient staff support to enable the person to take part in longer periods of physical activity.
Medication
Many people with a disability are on a large number of medications. This is referred to as ‘polypharmacy’. Many individuals need daily medications to control things like epilepsy or blood pressure levels, and for muscle relaxation in the case of high levels of muscle spasticity. Other medications include medications for control of fluid retention, treatment of mental health disorders, constipation, reflux, and treatment of infections arising as complications from other disorders (eg dysphagia and respiratory illness).
Figure 1: Your clients may need to take a number of different medications
The increased risk from medications arises from the interaction of the various drugs to produce other side-effects that can have an impact on health. For example, some drugs interact with others resulting in the person having side-effects relating to movement, behaviour, mood, or physical health. People with a disability are more at risk of having health problems relating to ‘polypharmacy’ because of:
· increased use of medications to manage behaviour
· a reliance upon the reports of others rather than the person directly reporting symptoms and side-effects
· reduced access to adequate regular review of medications that would detect these difficulties.
· a lack of awareness of the implications of symptoms especially of psychotropic medications (used for behaviour problems and mental health conditions).
Specific health problems
Dental health
Dental disease is much more common in individuals with a disability than in the general population. Oral health is very important to maintaining good general health. Poor oral health can lead to bacteria and infections in the mouth (eg, gum disease, dental decay and oral thrush). Recent research has also indicated that poor dental hygiene can be a factor in heart disease.
Because the saliva from the mouth is swallowed or inhaled, poor oral health can have follow-on health impacts and can result in increased risk of respiratory illness. Good oral health has been associated with less risk of developing aspiration pneumonia in individuals who have swallowing disorders. Therefore it is very important that people with a disability have even more rigorous attention to their oral and dental health, and regular dental health checks and the required treatment to ensure optimal dental and oral health.
Routines for brushing teeth and cleaning the mouth area might require particular attention in individuals who have a disability, as a range of factors can impact upon these; for example:
· ability to understand the importance of daily oral care
· ability to manipulate a toothbrush and independently undertake oral care
· dependence on others to perform daily oral care
· difficulties in swallowing and poor oral skills resulting in leftover food not being cleared from the mouth area
· presence of oral reflexes in cerebral palsy that prevent good access to the person’s mouth (eg bite reflex, hypersensitivity to touch).
· behavioural resistance to having teeth cleaned
· need for visual communication supports to step through an activity, remembering all sequential steps involved; some people require more support to complete good oral care regimes, remembering to do all steps in the sequence.
Sensory disorders
Hearing and vision deteriorate as a part of the ageing process for the majority of people in the general population. However, compared to the general population, disorders of hearing and vision impairment occur at a younger age and more frequently in people with a disability.
It can be difficult sometimes to assess a person’s visual skills, particularly if that person has a severe intellectual disability or complex communication needs and cannot respond in the testing situation. For this reason, many people with a disability who do have a visual impairment might not have adequate testing, and may be missed, thereby missing out on suitable interventions (eg eye surgery, glasses).
Hearing disorders increase with age and can also go unrecognised, particularly if the person is not able to understand speech because of a severe intellectual disability or complex communication needs.
Epilepsy
Almost one-third of people with intellectual disabilities experience epilepsy. Epilepsy is associated with increased risk of death at an earlier age, or sudden unexpected death. Health problems arising from the epilepsy are increased, and this is related to injuries sustained during falls and to the impact of the epilepsy upon cognitive skills. As people age, the cumulative effect of these incidents can impact significantly on cognitive functioning and mobility.
Thyroid disease
The thyroid is a gland in the neck, attached to the larynx, which is involved in releasing hormones that control metabolism. Hyperthyroidism occurs when the thyroid is over active, stimulating the metabolism to speed up which , among other effects, can result in behaviour disorders. Hypothyroidism occurs when the thyroid is under active, resulting in a drop in metabolic rate. This can be more difficult to detect, as the impact of this is dropping levels of energy or activity. If a person already has low levels of energy and is bored or fatigued and usually inactive, it can be more difficult to detect hypothyroidism. Adults with a disability need health screening to include a check of thyroid function to detect this treatable condition.
Thyroid disease is a health problem that may develop as people age, particularly if the diet has been iodine deficient, as is the case in many rural areas. Unrecognised, this can impact on weight gain, mood and other areas of functioning.
Gastroesophageal reflux disease
Gastroesophageal reflux disease is a disorder of the gastrointestinal tract, and is much more prevalent in populations with a disability than in the general population. Gastroesophageal reflux disease arises when a person has ‘reflux’. Reflux is when stomach contents come out of the opening at the top of the stomach, and into the oesophageal area. People with cerebral palsy and people who are overweight are at increased risk of reflux. Reflux of stomach contents results in a burning of the lining of the oesophagus, and this is painful. As a result, people with untreated reflux can exhibit challenging behaviours arising from pain, often associated with mealtimes in some way (before, during or after). Night time coughing is another symptom of reflux. When lying down in bed at night, the stomach contents are not assisted by gravity to stay in the stomach. Any leakage or reflux of stomach contents up into the oesophagus, and possibly into the larynx (which sits at the junction of the oesophagus and the trachea) can result in irritation to the larynx and coughing.
Reflux is a serious health issue for adults with a disability, particularly for those who have cerebral palsy and swallowing disorders, and those who are on enteral tube feeds. Disability support staff need to be aware of several strategies relating to detecting and managing reflux, as behavioural and environmental strategies in the management of reflux are often of benefit and complement pharmacological (medication) treatments.
Behavioural and environmental strategies in the management of reflux include:
· adherence to a program of pharmacological treatment (medications)
· smaller meals more often in the day, as compared to three large meals
· avoidance of foods that aggravate the reflux (acidic and fatty foods)
· sitting upright for 30-45 minutes after a meal
· sipping fluid during a meal to help oesophageal clearance of food
· not having large drinks during a meal, to prevent the stomach from being full
· timing of meals and drinks to ensure the stomach is not overfilled
· raising the head of the bed during sleeps
· reducing pressure on the stomach and abdomen, such as from tight clothing or supportive wheelchair straps, during and after meals.
The person who has reflux or gastroesophageal reflux disease needs to have an assessment by a general practitioner for medical management of the reflux, and by associated health professionals (eg speech pathologist, dietician) to advise on the behavioural and environmental aspects of reflux. This is another health area that may occur more frequently as people age.
Figure 2: A tool that disability support workers can use in managing problems that their clients may have with food
Helicobacter pylori
Helicobacter pylori is a bacterial infection of the gut and is common in people with a disability who live in institutions. This is because the infection is easily transferred from person to person, through poor infection control resulting from inadequate levels of hygiene between individuals. Unhygienic practices, such as not washing hands or sharing cups, spoons and other utensils, can spread the infection to a large number of residents and staff in a residential setting. Helicobacter pylori is associated with gastritis, peptic ulcers, and gastric cancers, and it is therefore important that it is detected and treated properly to prevent secondary health impacts.