Last week we posted a second blog about a project aimed at helping older people with learning disabilities have an active and inclusive retirement.
The number of people with learning disabilities in England aged over 60 continues to rise with the most recent predictions suggesting that by 2030 the number of adults aged over 70 using services for people with learning disabilities will more than double.(Emerson & Hatton 2008)
One of the interesting questions relates to what exactly ageing means for adults with learning disabilities. Administrative cut off dates relate to the organisation of services and impact on the distribution of resources, but ageing is a process that will vary in its effects and impacts person by person. There are some people, for example some people with Down Syndrome, for whom some age related issues have earlier onset than in the general population, which has led to some suggestions that there is an argument to setting a lower age threshold for ageing in the population of people with learning disabilities.
This Australian paper looks specifically at the needs of staff who are supporting older people and in particular their need for training.
Training for direct support staff can improve outcomes for people supported and reduce staff burnout, but the author suggests that training programmes in learning disability services had targeted staff working with younger and middle aged people.
The researchers set out to identify key training issues for staff supporting people ageing with a learning disability, from the perspective of actual support staff themselves. Interestingly, the researchers did not define what constituted ‘older’, but asked participants in the study determine for themselves, based on their experience, whether the people they supported were experiencing ageing issues.
What they did was to work with 31 staff from 14 different disability organisations in New South Wales, an area of over 800 square kilometres. They used the Delphi method, a structured process for collecting information from people with particular expertise, interest or knowledge.
This approach enables participants to make their own observations and contributions before establishing a group consensus on key issues which is done by holding a series of survey rounds.
The researchers did not have the resources to do this on a face to face basis, given the geographical spread of their area, so they used a pre-determined quantitative questionnaire
The researchers report the mean age of the sample (47 years) and the number of years experience (1-30) and point out that the majority of the participants were female, but that this was consistent with the proportions in the wider disability sector.
The researchers analysed responses from the successive survey rounds to gauge the importance of issues and the degree of consensus. Round one began with an open question regarding priorities in training. Round two was a list of these responses asking for agreement or if things had been overlooked. The third round asked participants to rate the importance of each issue. They found that consensus was reached for all items following the third round.
They then carried out a thematic analysis of the items that the participants had suggested were important where consensus had been reached to identify key concepts that might need further consideration and greater examination in the development of structured training programme.
What they found was that participants identified twenty-six issues in rounds one and two.
The thematic identified some key concepts which the authors put into five specific themes.
Generic Training Issues
There were a number of things that were aligned to mainstream training issues, rather than being specifically associated with concerns relating to ageing , for example relating to educating the general public, accurate record keeping etc.
In this theme, participants identified issues such as understanding dementia, diabetes, medication and training in observation skills for early detection of changes in medical status.
Emerging Ageing Issues Requiring Changing Support
Unsurprisingly, participants identified a range of issues that related to things that might mean changes in direct support practices which did not necessarily relate to a specific medical issue like diabetes. Some examples of these included Dietetics (meal preparation, tube feeding etc)”, people moving skills, use of specialist equipment, and understanding of the ageing process and consequent different support needs at different stages of ageing
Mental Health Issues
Participants identified the additional training in mental health separately to medical issues and the concerns related to getting a better understanding of emotional issues and the development of skills, for example in counselling, to better support other people using the service to deal with the “ageing issues of their friend.”
Quality of Life
Participants were concerned at how to best support people ageing with a disability to maintain their quality of and was noted under “Person centred planning” and “Quality of life management”.
Conclusion and comment
From the above findings, the authors make some specific recommendations for training development for each of the five themes, where better collaboration between disability services and generic health services to coordinate training opportunities is suggested, which is entirely in line with UK policy.
They suggest the possibility of training in being an ‘accidental counsellor’ and in mental health first aid, which suggests a basic understanding of counselling and a recognition and understanding of mental health issues.
They point out that this will enable staff to discriminate between new mental health problems, factors associated with ageing process, or issues arising from the existing learning disability.
Interestingly, in terms of responding to the concerns about quality of life, the authors identify person-centred planning as providing a framework for ensuring the right balance between quality of life and health needs. The ‘important to’ and ‘important for’ formulation found within person centred planning may be helpful here. Interestingly, they point out that there is currently widespread training available for rural support workers in person-centred training in Australia.
This is an interesting insight into what direct support workers feel they need in terms of training to provide better support to ageing people with learning disabilities. The Delphi method is well established and the paper Delphi approach taken by the researchers seems entirely appropriate given the geographical spread of the participants, even though the numbers were quite small.
The authors conclude that they have identified the need for training in health management, equipment usage, quality of life and mental health and have put forward some specific recommendations in these areas.
One concern with the study however, is that the definition of ageing was left to participants. This means that there may have been a number of different formulations in mind when responding to the questions. The role of values and service aims and objectives was not entirely clear. These could have a significant impact on training in quality of life and the balance between what is important for someone and what is important to them.
Wark, S., Hussain, R. and Edwards, H. (2014), The Training Needs of Staff Supporting Individuals Ageing with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 27: 273–288 [abstract]
Emerson, E and Hatton, C (2008) Estimating Future Need for Adult Social Care Services for People with Learning Disabilities in England. CeDR Research Report, 2008:6