Intellectual disability and ageing

Abstract

As people with intellectual disability are now living to a greater age, promoting and maintaining health, recognising disease and co-ordinating pathways of patient care, become increasingly important. The GP needs to understand problems associated with increased longevity in this complex patient group and to know how to support ageing patients. This article will provide background knowledge, advice and resources to better understand common age-related problems in people with intellectual disability and to support patients and their families in managing these issues.

Clinical case scenario

John is a 55-year-old man with moderate intellectual disability. He lives in shared living accommodation, with staff members that support his self-care and daily activities. A support staff member accompanies him to a work placement on 3 days a week, where he cleans tables at a local café.

John comes to surgery with his support worker Mark, who has known John for over 11 years. Mark is worried by a change in John’s behaviour. Over the last 4 months John has been struggling to cope at work, and is now failing to complete tasks at which he has previously been good. His employer is concerned that he can no longer cope with the job. John is less engaged in activities at home. He does not take part in house karaoke and is spending more time in his room. John is having accidents, with faecal soiling and needs more prompting with self-care. This is not normal for him.

There have been multiple recent changes in John’s life. His ageing mother is unwell and comes to visit less and his brother Daniel, to whom he was close, died a year ago from a heart attack. Mark is worried John may have dementia and wants your opinion of what is going on and how you can help John.

Life expectancy

People with intellectual disability have a lower life expectancy than the general population (Hatton et al., 2002). Life expectancy differs with severity of intellectual disability. Those with profound disability and associated complex needs live much shorter lives, and life expectancy remains reduced for those with moderate intellectual disability (Haveman, 2019; Holland, 2000).

However, for people with mild intellectual disability, life expectancy approaches that of the general population (Haveman, 2019; Holland, 2000). The overall trend is that people with intellectual disability are living longer, with those with mild intellectual disability, who possess the greatest independent functional capacity, living most frequently into older age (Haveman, 2019; Holland 2000). However, life expectancy of people with intellectual disability as a group, remains reduced, being an average 19.7 years lower than the general population (Glover et al., 2017) with age of death of 63 years for women and 65 years for men (Haveman, 2019).

Health issues in older people

The leading cause of death for people with intellectual disability is respiratory disease (Baxter et al., 2003). However, leading causes of death in older people also include cardiovascular disease, cancer and dementia (Baxter et al, 2003; Glover et al, 2017; Hatton et al, 2002; Winter, 2014). The major health issues associated with ageing in intellectual disability include cardiovascular disease, hypertension, nutritional problems, diabetes, cancer, dementia and sensory problems, (Baxter et al., 2003; Haveman, 2019,). There is also the issue of age-related social change, including retirement, changing structure of the family and bereavement.

Cardiovascular health and associated conditions

Cardiovascular disease is the second greatest cause of mortality in people with intellectual disability, accounting for between 14 and 20% of deaths (Holland, 2000; Winter, 2014). The high prevalence of cardiovascular disease is due partially to accelerated ageing processes in some conditions associated with intellectual disability (Winter, 2014). Lifestyle factors including high obesity rates (Glover et al., 2017) and unhealthy lifestyle choices also contribute. People, with poor access to lifestyle advice are less equipped to make informed decisions on healthy living, smoking and alcohol intake (Baxter et al., 2003; Winter, 2014).

In addition, cardiac events frequently go undiagnosed (Winter, 2014). This leads to less likelihood that secondary prevention measures will be put in place (Winter, 2014). Subsequently, people present later with established cardiovascular disease and existing cardiovascular disease often goes untreated.

Closely linked to the increased cardiovascular disease risk, is the high prevalence of obesity, metabolic syndrome and diabetes (Baxter et al., 2003;Winter, 2014) Obesity has been suggested to affect between 19.1 and 27.5% of men and between 27.5 and 58.5% of women with intellectual disability (Baxter et al., 2003). The main contributor to obesity, diabetes and metabolic syndrome is sedentary lifestyle (Baxter et al., 2003; Winter, 2014). The use of food as a reward, especially in family homes (Baxter et al., 2003) and the reduced capacity of some individuals to understand the impact of food choices, exercise and lifestyle habits on long term health (Winter, 2014), are a problem. Research suggests that up to 80% of people with intellectual disability get less exercise than recommended by the Department of Health, and a healthy diet with adequate fruit and vegetables is consumed by less than 10% of people with intellectual disability (Haveman, 2019).

Another issue is the effect of psychotropic medication on weight. People with intellectual disabilities frequently use antipsychotics, which are known to cause metabolic syndrome and weight gain (Winter, 2014). Obesity in older people, with intellectual disability is linked to higher rates of diabetes, and people with intellectual disability are more likely to be on medication for diabetes than other people (Axmon et al., 2017). In addition, although hypertension is less common, the condition is under-diagnosed and regimens of treatment tend to use older drugs, particularly diuretics (Axmon et al., 2017).

Cancer

Cancer rates in people with intellectual disability remain lower than in the general population (Hatton, 2002). However, cancer is the third biggest cause of death in this group (Hanna et al., 2011).

The incidence of gastric cancer in people with intellectual disability is higher than in the general population, causing up to 50% of all cancers (Dean, 2013). This is related to the higher prevalence of gastric reflux and increased rates of Helicobacter Pylori in people with intellectual disability, particularly those living in group settings (Dean, 2013). Early recognition and management of swallowing issues, gastric reflux, H.Pylori infection and hiatus hernia are a key to reducing the incidence of gastric cancer. Cases of persistent vomiting, dysphagia and weight loss need consideration for urgent secondary care review.

Two other common cancers in people with intellectual disability are urogenital and testicular (Hanna et al., 2011). Breast and prostate cancer are less common than in the general population (Baxter et al., 2013). The risk of uterine cancer is substantial, and colorectal cancer in women with intellectual disability is more prevalent than in men (Hanna et al., 2011).

Major issues for cancer identification include diagnostic overshadowing created by inability of people to fully express symptoms and the problem of common symptoms of cancer including weight loss, malaise, fatigue, sweats, and resulting behaviour change, being attributed either to medication or the intellectual disability itself. People with intellectual disability are less likely to undertake screening and many are excluded from screening programmes (Dean, 2013). Barriers to inclusion in screening involve a lack of understanding of the purpose of screening and the processes involved. Some people may be unable to access information about their appointments, due to limited literacy. Women with intellectual disability are less likely to undergo cervical screening (Dean, 2013), breast examination or mammography and are often exempted from invitation (Dean, 2013).

Research suggests carers have a variable awareness of the signs and symptoms of cancer (Hanna et al., 2011). This increases the potential for cases of cancer, particularly in earlier and treatable stages, to be missed in people with intellectual disability.

Dementia and mental illness

Dementia is much more common in people with intellectual disability than the general population, and tends to onset at a younger age (Hatton, 2002). This is particularly true in people with Down’s syndrome who have changes associated with Alzheimer’s-type dementia early in life, showing initial pathology including plaques and neurofibrillary tangles in pathology specimens, from their late twenties. The frequency of dementia in people with intellectual disability over the age of 65 years is 21%, compared with 5.7% in the general population (Hatton, 2002).

The presentation of dementia is varied. There is often regression in language, self-care, socialisation, sleep disturbance and onset of hallucinations. Behaviour change happens and can include anxiety, agitation, frustration, incontinence, low mood and social withdrawal. The symptoms of dementia are often missed, due to attribution of the behaviour change to intellectual disability. There is also late presentation of cognitive decline in some people, for whom their areas of functioning affected by dementia are reduced to begin with, so changes are less immediately noticed (Holland, 2000).

There is complexity in the diagnosis of dementia. There is significant overlap between features of dementia and other mental health problems. Withdrawal from normal activities, skill regression, challenging behaviour and emotional changes, can be symptoms of anxiety, depression and psychosis. These are at least as prevalent in people with intellectual disability as in the rest of the population.

The frequency of mood disorders, particular anxiety and depression is significant. Research studies suggest rates of psychiatric illness of 47% in those less than 65 years and 65% of those over 65 years in age (Holland, 2000). The challenge posed by differentiating depression, from dementia and the effects of social isolation, is a barrier to effective management (Holland, 2000) and in truth, these often coexist.

Sensory problems

Problems of vision and hearing are common in people with intellectual disability (Baxter et al., 2003); this occurs more frequent in people aged 65 years and over (Holland, 2000). Reduced vision is important, because deteriorating vision reduces the potential for interaction and impedes functionality and independence. Hearing problems are common. At least 40% of people with intellectual disability have reduced levels of hearing (Hatton, 2002). Ear wax is seven times more prevalent than in people without intellectual disability (Baxter et al., 2003). Ear infections need to be considered whenever someone presents with a change in behaviour, self-harm or agitation.

Carer reports of sensory issues are often inaccurate. In recognising visual impairment, clinicians assessing vision change only agreed with support staff one third of the time (Baxter et al., 2003). When visual and hearing impairments were considered together, carers only identified sensory problems in half the actual cases (Baxter et al., 2003) and carers were more likely to attribute reduced functionality coming from sensory losses to the intellectual disability (Dean, 2013). Bearing this in mind, and the fact that the earlier assistive aids (glasses, hearing aids) are introduced, the better the outcome and more tolerable their use is (Baxter et al., 2003), all people with intellectual disability need to have an annual screen of vision and hearing by a health professional.

Polypharmacy

As people with intellectual disabilities age, their development of chronic health problems means that they become even more vulnerable to polypharmacy (Holland, 2000). This group is commonly prescribed anxiolytics, antipsychotics, proton pump inhibitors, statins, thyroid medication, anti-epileptics and laxatives (Holland, 2000). These medications come with potential side effects and interactions and should only be continued when there is a definite ongoing condition for which they are providing symptomatic treatment. The common side effects of medications regularly prescribed in older people with intellectual disability are shown in Table 1.

Table 1.

Side effects of drugs commonly co-prescribed in older people with Intellectual disability

Medication class	Common side effects in people with intellectual disability.
Antipsychotics	Dyskinesia, parkinsonism, sedation, hypersalivation, drowsiness, constipation, metabolic syndrome, hyperlipidaemia
Antidepressants	Hyperactivity, restlessness, serotonin syndrome, constipation, gastric upset, headaches, impaired concentration, insomnia, hyper-somnolence
Antiepileptic drugs	Fatigue dizziness, unsteadiness, reduced immunity, weight gain, gastric symptoms, confusion, memory problems
Hypnotics	Agitation, increased somnolence, drowsiness, dizziness, unsteadiness
Proton pump inhibitors	Abdominal pain, nausea, vomiting, constipation, diarrheoa, headache

Source: Shoumitro (2018) and The Epilepsy Foundation (2019).

Social aspects of ageing

The ageing process brings social change. Reaching older age may require amendment of activity in day centre or supported employment settings and transition towards retirement. However, what this means and how it is achieved differs for every person and often there is little provision for this in the social sector, due to funding and organisational issues (Holland, 2000), which can lead to abrupt cessation of familiar routines.

Older age brings family change, with the death of carers, particularly older parents and siblings. This may lead to a move to stay with new relatives or into supported housing or residential care. These disruptive experiences not only cause bereavement of the loved one lost and life changed, but also exposure to new surroundings and people. These social changes can disrupt the provision of accurate medical and social information about the patient (Holland, 2000), which can lead to a loss of vital health information (Holland, 2000) and uncertainty over the relevance of behaviours, or signs and symptoms of disease when the person is seen in general practice.

Role of general practice

Recognition of health needs should translate into the utilisation of this knowledge in clinical practice. The ideal setting for health promotion and screening is the annual health check. A key component of creating meaning in these assessments, is continuity with a specific clinician, who has developed a relationship with the person, understands their baseline functioning and behaviour, has a working knowledge of associated genetic conditions, prior health problems and is therefore more likely to recognise and respond to deviations from normal.

By having a constant primary care contact (GP or nurse), patient and family have a designated person they can turn to when there is concern, developing the trust, understanding and knowledge of the person in their social and cultural context needed to understand key life events, family deaths, transition periods, that will contribute to changes in functioning over time.

As people age, the health check should be an opportunity to screen low mood, dementia, social problems, insomnia and medication side effects. Time should be given to reviewing the risk of cardiovascular disease, diabetes, weight, swallowing, vision and hearing. Health promotion of the benefits of exercise, healthy eating, cancer screening and sign-posting to supportive literature and resources must happen.

Undertaking this challenge requires protected time to enable a difference to be made. I personally find the use of 45-minute appointments for health checks in a designated clinic have provided my most meaningful contribution. However, I recognise that the allotted time will differ between practices. This extended appointment, is vital to understanding the individual. A proforma for the health check in Wales can be obtained from NHS Wales. In addition, computer template examples for the health check can be obtained from the RCGP Learning Disability Toolkit.

Managing cardiovascular health, obesity and lifestyle

The way forward in reducing cardiovascular burden is lifestyle change. Provision of information on healthy eating, exercise, weight loss, needs to be tailored to the individual. Qualitative research suggests that in managing lifestyle issues, people with intellectual disability respond better to advice given by someone familiar to them (Young et al., 2012). People with intellectual disability have a preference for the use of everyday activities in the promotion of exercise and making healthier swaps within existing food in their diet (Young et al., 2012) rather than complete changes in dietary regimens. Both patients and carers support the introduction of lifestyle change using short education sessions that build on the person’s existing social life and activity, rather than prescribed exercise or gym (Young et al., 2012).

Behaviour self-management programmes for weight loss and healthy eating have been more effective when carers are actively involved (Baxter et al., 2003). This highlights the need when discussing health promotion to engage carers and be familiar with the person’s daily routine and activities they enjoy. A thorough review of medication, checking for hypertension, consideration of an electrocardiogram, ensuring people with a high-risk profile are offered primary prevention strategies and review of any hypertension medication, are essential to ensure management reflects good practice guidelines.

Promoting screening and early cancer diagnosis

Education of patient and carer is paramount to reducing the risk of developing and of promptly identifying cancer. Patients and carers need to know the symptoms that are are significant. It is imperative that advice around common screening programmes is presented in the health check. The key to engaging patients is to develop trust, so that patients gain the confidence to undergo recommended cervical smear, breast, and testicular examinations at annual health checks. This requires appropriate access, including the option of prolonged appointments for screening examinations. An example is a double appointment for a smear and the option to visit the nurse in a smear clinic, to see equipment first, prior to examination. The GP must be familiar with sources of accessible literature for screening programmes for common cancers, so that supplementary information can be provided to the patient and carer. Sources of accessible cancer screening information are included in Table 2.

Table 2.

Resources available to support ageing people with intellectual disability, and their carers.

Health ageing	The British Institute Of Intellectual Disability has resources to promote healthy ageing including their active ageing film, made by people with intellectual disabilities, available to watch on www.bild.org.uk/resources/ageingwell/activeageing
Cancer screening	There are multiple sources of easy read information to help people with intellectual disability understand self examination for common cancers and the process of screening: Bowel Cancer Screening: www.gov.uk/government/publications/bowel-cancer-screening-easy-guide Breast Cancer Screening and self check: www.cancerresearchuk.org/sites/default/files/150724_bcoc_breast70_easyread_leaflet_web.pdf Testicular Cancer screening and self check: https://be.macmillan.org.uk/be/p-23345-how-to-check-your-balls-testicles.aspx Cervical screening: www.jostrust.org.uk/shop/cervical-screening-and-cervical-abnormalities/easyread-booklet-having-smear-test-what-it-about Prostate cancer: https://prostatecanceruk.org/media/2498525/find-out-about-your-prostate_ifm.pdf
Dementia	Easy read fact sheets about dementia can be downloaded free from the British Institute of Intellectual Disability at www.bild.org.uk/resources/ageingwell/dementiafactsheets/. A dementia information leaflet in easy read format for patients can be obtained from: www.alzheimers.org.uk/sites/default/files/2020-03/what_is_dementia_er1.pdf An information leaflet on dementia can be obtained from www.alzheimers.org.uk/sites/default/files/2020-01/430LP%20-Learning%20disabilities%20and%20dementia.pdf
Bereavement	Macmillan provides easy read information on bereavement and how people with intellectual disability can learn to feel better following the death of a close person on their website: at http://be.macmillan.org.uk/Downloads/CancerInformation/Easyread/MAC16345What-can-help-you-feel-better-when-someone-dies.pdf Macmillan also provides easy read advice about what people can expect at a funeral: http://be.macmillan.org.uk/Downloads/CancerInformation/Easyread/MAC16311Going-to-a-funeral-when-someone-dies.pdf Further information on bereavement and loss can be accessed in an easy read leaflet by the government of New South Wales www.health.nsw.gov.au/disability/Publications/being-a-healthy-woman-83-87.pdf There is a helpful resource for carers on helping someone with intellectual disability come to terms with bereavement available from www.essexice.co.uk/media/46502/beareavement.pdf
Books beyond words	Paperback easy read books that can be purchased online. Books are available that cover: loss of a family member, looking after your breasts, exercise, healthy eating, diabetes, heart disease, eye health, dementia, cancer, to name a few. Available from https://booksbeyondwords.co.uk/bookshop
Planning for social transition	There is an excellent booklet with advice for carers about looking toward changes in care needs, ageing relatives, the need to make decisions to provide secure support for their loved one A fully comprehensive guide on resources available to carers planning for the future of loved ones and can be accessed via: www.learningdisabilities.org.uk/learning-disabilities/publications/thinking-ahead-planning-guide-families. The report is called: Thinking Ahead: A Planning Guide for Families.
Helplines	Advice on all aspects of ageing, health, dementia, local support groups and services can be accessed through national helplines and websites Downs Syndrome association: DSA Helpline: +44 (0)333 1212 300. www.downs-syndrome.org.uk Mencap: Learning Disability Helpline: 0808 808 1111, helpline@mencap.org.uk, www.mencap.org.uk/advice-and-support/our-services/learning-disability-helpline British Institute of Intellectual Disability: 0121 415 6960, www.bild.org.uk

Supporting people with mental health issues

The key to effectively managing mental health issues in older people with an intellectual disability is to have a high index of suspicion of their occurrence. The clinician must take a clear history of changes in level of activity, mood, engagement, challenging behaviours, skills regression, delusions and hallucinations. The potential for misdiagnosis is much greater than in the general population, and the responsibility lies with the clinician to rule out biochemical and endocrinological causes of symptoms before involving the local psychiatry team. Careful consideration of infection, pain, constipation, social problems, hypothyroidism, B12, folate deficiency, low vitamin D, diabetes, medication side effects, sensory impairments, must be made prior to labelling the individual with a mental health diagnosis.

The assessment of symptoms of dementia in General Practice for people with intellectual disability will rely heavily on clinical history taking, from the individual and their carer. Specific dementia screening tools exist, including the Dementia Questionnaire for People with Learning Disabilities and Neuropsychological Assessment of Dementia in Adults with Intellectual Disabilities. However, these are only really suitable for secondary care, due to the time needed for their completion.

Where mental health problems or dementia are suspected, the place of onward referral for assessment depends on prior service use, the severity of intellectual disability and local service provision. Generally, people with mild intellectual disability should be referred to the generic mental health services and old age psychiatry, whereas those with moderate and more severe intellectual disability or particularly severe mental health symptoms require involvement of the learning disability psychiatrist. The key to effectively managing the patient is building good working relationships with the local community learning disability team and psychiatry. Then, difficult cases can be discussed so that appropriate referral is made early.

Supporting people with dementia involves meeting health needs that arise from dementia and can require screening for aspiration, referral for speech and language input for swallow assessment, dietician review and signposting to support services and groups for the patient and their family. The GP will have some involvement in issues of reviewing capacity in this setting and in supporting family members who may be overwhelmed and need guidance on how to get extra support. The GP needs to not only understand how referral and use of social services is undertaken, but needs to be able to assess capacity, and provide every opportunity to facilitate capacity and shared decision making, particularly in the elderly, who may have no living relatives. The GP may need to liaise with both the learning disability psychiatrist and an independent mental health care advocate. A list of support services for common aspects of ageing in intellectual disability, including mood disorder and dementia is provided in Table 2.

Managing sensory issues

The clinician should do a rudimentary hearing test, including ability to hear whispered speech, response to other noises (tuning fork, carer voice, louder words). Ear canals should be checked for infection and wax, and where present, wax should be treated with drops and removal arranged. Ear infections require prompt treatment. In cases where doubt exists about the maintenance of baseline hearing, audiology input is needed, and where cases are more complex, ear nose and throat specialist referral should be sought.

Vision change is more difficult to detect, but basic field examination, accommodation assessment and rudimentary review of visual fields and the presence of cataracts, can be undertaken in general practice. All people with intellectual disability should have an annual eye test with an experienced optometrist.

Poly-pharmacy review

The poly-pharmacy review is important in older people with intellectual disability, who may be on multiple medications and prone to the effects of medication interactions. The use of antipsychotics can increase cardiovascular risk, as well as cause metabolic syndrome and can affect alertness and cognition, which may cause changes in function, mood and activity (Haveman, 2019). Some medications require drug level and biochemical monitoring and the poly-pharmacy review is an opportunity to arrange suitable blood tests (e.g. thyroid function, prolactin, vitamin D, anti-epileptic drug levels), in patients taking medications that need monitoring. Poly-pharmacy review provides an opportunity to stop medications causing side effects, affecting cognition or that are no longer needed. Medications at particular risk of being prescribed longer than needed include hypnotics, laxatives and proton pump inhibitors.

Responding to social changes

Awareness of social change gives the clinician the opportunity to support the patient and their family. As people get older, particularly into their fifth decade of life, opportunities can be made in the consultation, to ask patients and their carers whether any thought has been given to long term care planning. This is a delicate issue and can be uncomfortable for the person and their family to discuss. Early recognition of the natural progression of the ageing family can help stimulate the discussion among families, who may otherwise delay this conversation.

Asking whether family have considered which siblings, friends, cousins, or employed care staff will be involved in future care can help the patient and family formulate their social care plan early. This allows the person greater time to adjust to resultant changes in routine and to develop relationships with those who will increasingly become larger parts of their life. This reduces the shock, grief and sense of loss, when the carer and care setting does change.

If the GP has an idea who will be involved in the person’s care longer term, they can encourage, with the patient’s consent, early involvement of the support network of people in health checks, which will help reduce the loss of healthrelated information that often follows the loss of the elderly parent or principal carer. If a transition in carer is anticipated, plans can be made to optimise the information available to health professionals, e.g. by encouraging the family to have a health passport detailing the persons communication, normal behaviours and signs of distress, that future members of the care team can bring to consultations. An example of a healthcare passport is shown in Fig. 1.

Figure 1.

An example of a health communication passport.

Awareness of grief and bereavement allows the GP to make sensible inquiries about these social issues when there is challenging behaviour, low mood or altered functioning, reducing misdiagnosis of these problems as depression, anxiety or dementia. To support the GP, there is much information available in helping people with intellectual disability manage grief, family and care transition and bereavement, as shown in Table 2. The GP has a key role in highlighting the availability of this information to patients and carers.

KEY POINTS

Increased life expectancy in people with intellectual disability, creates increased prevalence of age-related health issues

The most common health problems in older people with intellectual disability include cardiovascular disease, cancer, dementia and sensory impairment

Social change poses unique challenges to families, with carer change and bereavement being important causes of challenging behaviour, low mood and skills regression

Older people with intellectual disability, are subject to poly-pharmacy and side effects of drugs can mimic other diseases

General practice has a key role in identifying physical illness, differentiating this from psychiatric and social problems and in supporting the patient and family through the transition into older life, often through the annual health check

ORCID iD

Dr Maria Vincent https://orcid.org/0000-0002-6319-6990

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