Life expectancy for people with learning disabilities has improved in recent decades and many are living to later life. Chronological age though cannot be taken as a reliable indicator of age-related needs as each person will have different disabilities and circumstances.
Older people with a learning disability are also more likely to develop serious health problems due to late diagnosis because of difficulties in communicating symptoms.
Growing Older with Learning Disabilities (GOLD) is an initiative facilitated by Bild (British Institute of Learning Disabilities) that aims to support people with learning disabilities as they age.
The charity recently held their annual conference, which explored best practice to ensure that the best possible health and social care is provided for people with learning disabilities in later life.
Talks and workshops focused on a range of topics that are relevant to an ageing population, with special focus on how people with learning disabilities can live long, happy and healthy lives.
The conference began with a talk by Dr Karen Dodd, Consultant Clinical Psychologist, Surrey and Borders Partnership, who spoke about measuring quality outcomes for people with learning disabilities with dementia.
Ten years ago, with a colleague, Dr Dodd developed a dementia outcome measure specifically for people with a learning disability. This looks at the quality outcome for the person as the dementia progresses, and also supports families and staff to identify what needs to be in place to assure quality.
The Quality Outcome Measure for Individuals with dementia (QOMID) can be used with anyone with dementia and is staged for the three main stages of dementia – suspected/early, mid and late stage.
There are 17 domains and although the domains are the same for each stage, the description of quality outcome may change across the stages to reflect the different requirements as dementia progresses.
The professional completing the QOMID needs to use a combination of results from formal assessments together with their professional judgement to decide which stage of dementia the person is currently experiencing.
Wherever possible, and depending on ability, the person with dementia should be asked how they would rate their experience in each domain. Additional information to make an inclusive judgement may come from family, support staff, advocates, care managers or anyone else involved with the person and their support.
The aim is that a person’s changing needs are recognised and met. As the person moves into each stage of dementia, the quality outcome score for each domain may start at 2 or 3, but as people work together to improve the person’s quality outcome, the scores should reach the maximum of 4 in each domain.
This may mean that scores may fluctuate during the course of the dementia as support ‘catches up’ with the person’s changing needs.
In a recent study, the domains where a quality outcome was more likely to be achieved are those that care staff already have skills, such as mobility and nutrition.
The domains that scored lower were those where there were specific issues related to dementia such as person-centred approaches (life story books). The environment domain scored lowest as the evidence from a previous study is that most learning disability settings are not dementia friendly.
Dr Dodd recommended that the QOMID was used for individuals at least when the person is diagnosed, moves to mid stage and moves to late stage, but recommendations and actions achieved should be reviewed at least annually.
She added: “Measuring outcomes for an individual are key to support the person to live well with dementia. Whole team training to deliver a capable workforce is key to supporting staff to understand what is needed to improve the quality of life for the person through the course of their dementia, using the QOMID as a reference point.”
The second keynote presentation was delivered by Danielle Adams, Doctoral Researcher, University of Warwick, who looked at the impact of the perimenopause and the menopause on the lives of women with learning disabilities.
She began with a case study of a 50-year-old female with a learning disability who repeatedly removed her clothing. Her behaviour was considered challenging by carers and her GP, who wanted to initiate risperidone (an antipsychotic). Her care manager, a woman in her 50s, suggested that she could be having hot flushes and insisted that hormone levels were taken prior to prescribing risperidone. The blood test confirmed that the woman was perimenopausal.
The case highlights the importance of supporting woman with learning disabilities across their lifespan and this includes the perimenopause, which is the time from the beginning of irregular periods until 12 months after a woman’s last period, and the menopause, which is one year after the last menstrual period.
Menopausal symptoms can last for several years and the average age of the menopause in the UK is 51, although women with Down’s syndrome can reach menopause on average five years earlier.
Danielle said that women with learning disabilities need accessible information about the menopause as they might not even consider reporting symptoms.
Perimenopause can have a major effect on physical health, mental health and wellbeing. For example, Danielle says that pain can be a cause of behaviour that challenges as can the inability to cope with the change of routine of regular periods or the embarrassment of managing heavy periods.
She said all stakeholders should be educated about the menopause in relation to women with learning disabilities with wider consideration of the implementation of gender specific support through the ageing process. There should also be person-centred care and support to avoid diagnostic overshadowing.
In the future, she would like to see some clinical guidance developed on medication and other interventions for women with learning disabilities as well as quality improvement initiatives.
In this talk, Dr Melanie Chapman from the Greater Manchester Growing Older with Learning Disabilities (GM GOLD) team spoke about their recent research about loneliness and social isolation among people with a learning disability.
She said most professionals are still trying to work out how people with a learning disability fit into the elderly model and there is still lots of things they don’t know about older people with learning disabilities.
What they do know is that up to half of people with learning disabilities are chronically lonely, compared with 15-30% of the general population and this has an impact on health. Lonely people are nearly twice as likely to die prematurely.
For this reason, their first research project focused on how to reduce social isolation amongst older adults with learning disabilities (aged 50+).
The group interviewed 59 people aged between 50 and 79 years old and found that many people who took part would not be considered socially isolated because of the number of people they saw on a day-to-day basis. Many also had busy, active social lives and felt part of their local community or did voluntary or paid work. However, many were, or had been, lonely and wanted closer, more meaningful relationships.
They were also more likely to have experienced negative events, discrimination and hate crime. As many older people with learning disabilities went to special schools or lived in institutions, they are unlikely to have had paid work and may be poor.
Other factors that might impact on sense of belonging and self worth is the death or poor health of parents, which may mean that they have to move out of the family home for the first time. They also experience the death of friends and deteriorating health and mobility.
Things that could help include:
How to break down barriers and talk to people with a learning disability about death and dying was the theme of the session run by Nicola Payne and Rachel Furniss from MacIntyre.
In May 2021, the charity secured almost £170,000 of National Lottery funding to pilot a project that worked with people with a learning disability, support workers, family members and the wider sector on end of life planning.
The Dying To Talk project aims to help people with a learning disability and their families feel less frightened to hear about and talk about death and dying so that they can make personal choices.
Rachel said that at end of life it was important that a person’s wishes and preferences were carried out and that they felt safe, secure, comfortable and loved.
The charity runs workshops on the subject and has also developed a legacy of resources and training guidance for professionals. There is also additional help available to guide more people to have advance care plans and wills.
Lindsey Allen, Bild’s Learning Disability and Autism Manager said of the conference: “I am delighted with the success of this year’s Ageing Well with Learning Disabilities Conference, which was received with great positivity from attendees both in-person and online. The combination of research, good practice examples and the voice of lived experience gave the event a unique focus which kept delegates engaged throughout. We are overwhelmed by the encouraging feedback and hope to build on these success again in 2023.”
