Guidance

Dementia in people with learning disabilities: reasonable adjustment case studies

Published 18 June 2018

We were glad to receive a number of examples of good practice in support for people with learning disabilities. We did not hear about specific examples of dementia prevention; some contributors noted that this might be covered by general healthy living support being offered to people with learning disabilities, as the advice is so similar to heart health messages. We received most examples from services for people with learning disabilities, rather than from dementia services, although these included a few strong examples of joint working.

Pathways

Choosing the best route for dementia assessment in Devon

The multidisciplinary dementia specialist working group within Devon Partnership NHS Trust learning disability services looked at how to improve the process for a person with learning disabilities to get a dementia assessment. Neither the trust’s memory service nor the learning disability service thought that the existing system worked as well as it should: the standard memory assessment tools and processes used by the mainstream memory service were too complex for many people with learning disabilities. Some people were referred back and forth between the 2 services and some adjustments suggested were beyond what the capacity of the memory service allowed.

In collaboration with the memory service the working group developed a triage tool to inform decisions about the best route for an individual to be referred for assessment. This is accompanied by a map showing the options: the memory service or the learning disability intensive assessment and treatment team. Support from liaison nurses can be offered for a person attending the memory service. Both the tool and the map are available on request. This approach is being disseminated through primary care, with the support of the GP lead for learning disability.

For further information, please contact Dr Fiona Gill, Clinical Psychologist and Chair of the Dementia Specialist Working Group, Exeter Intensive Assessment and Treatment Team for Adults with a Learning Disability: [email protected]

Experience with an integrated care pathway and link workers

Derbyshire Healthcare NHS Foundation Trust developed an integrated mental health and learning disabilities service care pathway for people with dementia some years ago, as described in the 2013 version of this guide. Based on guidance from the National Institute for Health and Care Excellence (NICE), it was underpinned by:

• learning disability training for staff working with older people, including a questionnaire for new staff that determines their understanding of learning disabilities and dementia and their subsequent training requirements
• dementia training for learning disability staff
• accessible life stories folders for all people using the service (not only those with learning disabilities)
• a link worker/champions network across learning disability and mental health services

The link worker/champions network continues and is valued; a recent meeting discussed the original pathway and how this has changed over the last few years. Changing commissioning arrangements, service redesigns and rising demand on services have reduced the capacity for joint working. Concerns from the network will be discussed with commissioners in order to find a new resolution.

For further information, please contact Gaynor Ward, Consultant Nurse, Derbyshire Healthcare NHS Foundation Trust: [email protected]

Facilitating access to mainstream dementia services: the Salford dementia diagnosis and intervention pathway for people with learning disabilities

The Salford learning disability team worked in partnership with local dementia services to implement guidance from the British Psychological Society and Royal College of Psychiatrists on assessment, diagnosis, interventions and support of people with learning disabilities and dementia. This guidance emphasised partnership working between learning disability and mainstream services.

A dementia strategy group started in 2008 with the aim of improving services to people with learning disabilities. This involved a wide range of dementia services in addition to the learning disability team. More recently the group has developed a detailed dementia diagnosis and intervention pathway. This has enabled equal access for people with learning disabilities to all aspects of dementia care, with reasonable adjustments, while also having access to specialist assessment where necessary.

The pathway helps to ensure effective multidisciplinary team working by guiding professionals through the process of referral, assessment and diagnosis. Following screening in primary care, initial assessment is completed by the memory assessment and treatment service (MATS). MATS liaise with the learning disability team and a decision is reached about whether the person will follow the MATS pathway or the learning disability dementia pathway. If diagnosis is pursued through the learning disability team, a one-off session led by the team helps plan further interventions, including from mainstream dementia services. This takes account of the needs of the individual and of their support network. Whichever pathway is followed initially, the person can be referred to the other one at any point. The 2 services keep each other informed and also ensure that information is shared with the person’s GP.

The challenges included:

• bringing the right people together from the MATS, voluntary sector and other dementia services, maintaining open communications and ensuring that everyone feels valued: it has been important for the group facilitator to have protected time to do this
• creating the pathway as a group endeavour to ensure shared understanding and support, trialling it in practice and being willing to amend it over time to ensure that it is effective

Shared commitment to the pathway and joint working has enabled the development of strong, interdisciplinary relationships between local services, enhancing the service provided to people with learning disabilities. The group is proud of what has been achieved so far to plan and develop an integrated service for people with learning disabilities.

For further information please contact Dr Jenna Westbrook, Clinical Psychologist, Salford Learning Disability Team: [email protected]

Roles of learning disability health services

Leadership from the community learning disability health teams

The Manchester learning disability health teams developed a number of tools and processes to support people with learning disabilities who have dementia:

1. A series of top tip sheets for supporters (family carers, support staff and whoever is working with/supporting people with dementia) regarding challenging behaviour, a suitable environment, eating and drinking issues, communication, personal care and maintaining skills. These are now in the process of being adapted for use with carers of people without learning disabilities
2. A baseline screening service for people with Down’s syndrome before the age of 30. The assessments are repeated periodically
3. A multidisciplinary dementia pathway incorporating assessment and intervention, developed in conjunction with local memory services
4. Accessible information sheets about the assessment process for carers and people with learning disabilities, along with information sheets about interventions such as creating a memory box or life story book. A post diagnostic pack is also available
5. A multidisciplinary dementia interventions review process: everyone with dementia is reviewed every 6 to twelve months by a multidisciplinary group. At this meeting a dementia interventions checklist is completed to ensure everyone has equal access to the dementia interventions available
6. Dementia awareness and dementia interventions training is provided regularly throughout the year for carers

A more recent development has looked at the applicability of the ‘Strategies for relatives’ intervention for carers of people with a learning disability and dementia. The programme of psychological therapy aims to reduce depression and anxiety in family carers. This has been demonstrated to be clinically and cost effective with carers of people with dementia in the general population and initial findings have shown this to be the case for carers of people with learning disabilities and dementia too.

Links into the Trust’s dementia steering group have been made to ensure that people with learning disabilities are considered at a broader level in service planning.

The teams evaluated ^{[footnote 1]} their dementia services in 2017 and the findings from this are being used to refine the approach.

For further information, please contact Dr Nicola Jervis, Locality Lead (North) - Clinical Psychologist, Manchester Learning Disability Partnership: [email protected]

Strategy led by a dementia special interest group

The learning disabilities service within the Aneurin Bevan University Health Board has a well-established dementia special interest group that is attended by a range of health professionals from the service as well as colleagues from the local authority and third-sector organisations. The special interest group has undertaken lots of work over the past few years. This included developing:

1. Dementia good practice guidance, which aims to ensure that individuals with a learning disability who have suspected or diagnosed dementia are identified early, that they have a timely diagnosis, and that individuals and their carers receive person-centred interventions and support. The guidance supports health professionals working within the service to follow best practice guidance and deliver evidence-based care. The memory care pathway ensures a consistent approach and that individuals and their carers receive the right support from the right people at the right time
2. Memory clinics within each of the community learning disabilities teams, which have multi-professional representation. The memory clinics aim to support: a co-ordinated approach to assessment; multi-professional assessment and diagnosis; multi-professional formulation and intervention planning, and effective communication between professionals and individuals and their carers. Evaluation of the clinics has highlighted many benefits, including for example increased person-centred care; improved timescales, and less duplication of assessments
3. A baseline assessment project, based on best practice guidance, which aims to speed up the process of assessment and diagnosis. Everyone with Down’s syndrome over the age of 30 is offered an assessment of their cognitive and social functioning so that in the future if there are indications that someone may have dementia, the service has a baseline against which change can be assessed
4. Information sessions for carers who are supporting individuals with learning disabilities and dementia. The session brings all the people in the individual’s support network together for a day. The morning involves general information sharing on dementia and the afternoon is tailored to the individual and therefore allows person-centred discussions and intervention planning to take place

For further information, please contact Dr Rachel Potter, Consultant Clinical Psychologist: [email protected]

One of the areas chosen for improvement was end of life care for people with Down’s syndrome who have dementia. Learning disability nurses are seen as having a valuable contribution to make in providing good information and starting ‘difficult conversations’ about the future with individuals and their families. Advance care planning offers the potential to increase choice and control for people at a time in their lives when they can otherwise feel powerless.

For further information, contact Rachel Morgan, Specialist Lead for Learning Disabilities/Senior Lecturer Nursing (Learning Disabilities), University of South Wales: [email protected]

Adapted cognitive stimulation therapy group for adults with learning disabilities and dementia

Two community teams (Bracknell and Wokingham) collaborated to adapt a manualised cognitive stimulation therapy (CST) group for people with learning disabilities and a diagnosis of dementia. Following a pilot, the teams offered two 14 week group programmes. They found that participation was feasible with minimal adaptations. More research would be needed to test whether this result could be generalised; qualitatively it was a successful intervention for those groups. Adaptations included:

1. One weekly session of 1.5 hours, with up to ten people (plus support staff, who were expected to help with ‘homework’); partners and people living together were also invited, to promote understanding and also support continued discussion between sessions
2. Mixing individual and group activities, using visual aids, physical objects, structured activities (such as planting spring bulbs) and sensory activities (for example, touching sand and water to prompt holiday memories)
3. Talking about television soaps instead of news headlines, focusing on practical matters such as paying for everyday items, encouraging people to talk about their families and pets, and playing familiar games
4. An informal memory café group between the two 14 week sessions: meeting at a café to play games or have a visit from Dogs for Good, or going on outings (such as a beach day trip, an air museum, picnic and walk in the park and animal sanctuary). The purpose was to maintain and further develop social interaction between the group members
5. Adding learning disability specific outcome measures to the CST outcome measures

Consistent day, time and venue were important for the group, as well as consistent staff support to the participants. Support workers were offered dementia training and the facilitators observed a subsequent increase in staff commitment and involvement, with a positive effect on group members’ attendance and participation. The facilitators needed to manage the pace of the group and the level of instructions to suit individual participants. A leaflet for group members and support workers about what to expect was sent out prior to the group starting and was found helpful. Examples of impact:

1. Friendship and camaraderie increased: for example, in the way group members greeted each other and asked about people who were missing
2. Considerable changes in behaviour: increased participation and communication, increased range in the topics of conversation
3. Improved understanding and acceptance by people living with group members

For further information, contact Emma Shaw, Occupational Therapist, Bracknell Community team for People with Learning Disabilities: [email protected]

Dementia awareness in nurse education

Since 2011 the Health and Social Care Clinical Education Centre (CEC) has provided in-service education to nurses, midwives and allied health professionals employed in the 5 health and social care trusts across Northern Ireland. The CEC offers a range of programmes relating to the management and care of people with dementia. One of these is a half day awareness session on dementia in people with learning disabilities, available to learning disability nurses and support workers. Resources such as ‘About Derek’ help to inform the programme.

Feedback from the sessions has been positive. It demonstrated that staff felt more equipped with the knowledge and skills to recognise the early signs of dementia and had strategies to manage the situation more effectively, thereby improving the quality of care that people experienced. Follow-up data showed that these sessions promoted changes in practice. For example, one participant had reviewed practice in relation to communication and responses to different behaviours and support for people at mealtimes. This included looking at simple aspects of environmental design, such as the tablecloths and utensils. The nurse realised that the pattern on the tablecloth was causing distress to a particular person at meal times. The cloth was changed to a plain one and a significant improvement in eating, drinking and behaviour was observed as a result. It was felt that this small change and its significant impact had promoted improved health and wellbeing in the individual.

For further information contact Moira Mallon, Nurse Education Consultant, HSC CEC: [email protected]

Strategic approaches by support providers

The MacIntyre dementia project

National charity MacIntyre recognised ten years ago that the organisation was supporting an increased number of older people and needed to improve its understanding of dementia. Following several years of practice and service development, MacIntyre was awarded a Department of Health grant to create a range of learning and multi-media information resources to improve support and care for people with learning disabilities who have dementia or are at risk of developing dementia. The aims of the project are to:

• help raise awareness and understanding of dementia among people with learning disabilities, their families and professionals
• help people with learning disabilities to receive a timely diagnosis of dementia
• train professionals to provide better care for people with learning disabilities living with or at risk of dementia

The project includes: creating resources to increase knowledge and understanding (including easy-read); providing learning opportunities for all staff and developing a portfolio of good practice to disseminate to other interested organisations.

Co-production with experts by experience in every aspect of planning and delivery is a vital element of the project, with 2 project team members, a consultation group (‘Keep Going …Don’t Stop!’) and more people involved in making films and piloting materials. The Checkers group supports the creation of easy-read resources. Involving the people MacIntyre supports can be challenging; the organisation has had to be creative, ensuring that people’s stories, personal journeys and reasons for advocating are always shared from their points of view.

A number of resources are already available on the MacIntyre website:

1. A range of stories about the lives of people supported by MacIntyre and their personal journeys with dementia.
2. A series of 6 films in which a MacIntyre manager talks about her experience of supporting someone with learning disabilities and dementia. The series covers understanding the emotional impact of a dementia diagnosis on the person, on staff, as well as on family, friends and other relationships and how staff can prepare for the future.

A new ‘Wellbeing for life’ toolkit brings together a range of resources to promote awareness and understanding about getting older with learning disabilities and living well with dementia. Organised into themes, from ‘Fit for the future’ to a dementia pathway and end of life care, the toolkit includes e-learning resources, easy-read materials, MacIntyre documentation and further reading. Piloted in 2017, the toolkit will be available across the organisation by the summer of 2018.

For further information, contact Sarah Ormston, Specialist Health Adviser and Dementia Project Manager, MacIntyre: [email protected]

Dementia strategy and practice development

Support provider CMG set up an ‘ageing well’ forum to improve understanding of ageing in the people supported, encourage preventative support and share good practice and research. The forum is open to all services supporting people over the age of 55 (or over 35 if they are supporting people who have Down’s syndrome). Staff attending are responsible for cascading information to colleagues within team meetings.

Representation from the parliament of people supported by CMG is also encouraged. Dementia is a strong theme in the forum’s work and a dementia strategy was developed, with accompanying training and an audit tool. The strategy is being implemented throughout the organisation’s services. The main elements include:

1. Using the King’s Fund environmental assessment in each service, completed collaboratively with staff, people who use the service and health professionals. The aim is to promote wellbeing by focusing on mobility, orientation, enhancing meaningful interaction and purposeful activities in a calm, safe environment.
2. Baseline assessment of individuals to inform early recognition that a person might be developing dementia, using the cognitive and behavioural skills checklist. Focusing on observation of functional and cognitive skills, this can be completed by social care staff who know the individual and can highlight physical and cognitive deterioration over time. This would then prompt referral for a clinical dementia assessment or assessment/investigation for possible differential diagnosis.
3. Exploring meaningful activities for older people, such as ‘singing for the brain’. Music is tied closely to emotional memories, so lyrics and melodies often remain firmly fixed in the brain, even though other memories have faded. Taking part in musical activities can be fun and boost confidence, mood and self-esteem. The forum tried out and enjoyed singing along to music videos from YouTube.
4. Gathering and sharing useful resources, such as the College of Occupational Therapists toolkit ‘Living well through activity in care homes’, ‘hot tips’ from MacIntyre, the ‘Talking together’ toolkit from the Foundation for People with Learning Disabilities, a pain assessment tool and ‘Jenny’s diary’ from the learning disability and dementia knowledge exchange forum (all the suggestions from CMG are in the Resources section of this guide).

In 2017 an ‘ageing well’ day was organised to promote healthy and active ageing for people CMG support. People aged over 55 (35 if they had Down’s syndrome) and their families were invited. The day included a range of activities and therapies proven to promote physical and emotional wellbeing, such as a 60s reminiscence marquee, mindfulness, tai chi, walking football, singing for the brain, pet therapy and a sensory woodland trail. There were also plenty of resources and other activity ideas to inspire staff.

Taken together these initiatives aim to promote dignified, respectful and person-centred support so that the people supported have the potential to age successfully, leading healthy and fulfilling lives.

For further information, contact Michael Fullerton, director of quality and clinical support, Care Management Group Ltd: [email protected]

Person centred support through enabling environments and staff training

Future Directions community interest company supports people with Alzheimer’s, including people with learning disabilities and Alzheimer’s. Staff receive training that looks in depth at how dementia affects people with learning disabilities and how this may be different from the general population (for example, early onset). Training covers the importance of noticing early changes in the behaviour of the people they support and securing an early diagnosis (or identifying other health problems that can be treated). Early action can result in positive management of the disease and the symptoms an individual may be experiencing.

Difficult behaviour is not an inevitable consequence of dementia. One important set of actions for a support provider is to identify ways in which the environment can be made enabling rather than disabling. These changes can be subtle and will differ for each individual, but the impact on the person can be very positive. For example, putting labels on doors enables people to make sense of the environment around them and to feel independent and free in their own home. Contrasting colours within the home, such as painting a door green so it stands out next to a white wall, can remind the person what the door is for and where it is. This avoids confusion, leading to less anger shown, more independence and less reliance on staff. Such simple changes to the environment can make a big difference to the person’s quality of life.

Using photographs of family, staff members and friends provides reassuring familiarity and reduces anxieties. Photographs of people themselves when they were younger help them to connect at times to memories that may otherwise have been forgotten and that make them feel safe. Person centred approaches such as these help to ensure that each individual supported by Future Directions continues to be seen as a person with much to offer, living a life that matters.

For further information, contact Paula Braynion, Managing Director, Future Directions Community Interest Company: [email protected]

Sensory stories for individuals with learning disabilities and dementia

Sensory stories are a very simple type of resource with lots of potential. Joanna Grace, sensory engagement and inclusion specialist, set up ‘The Sensory Projects’ (see below) and has used them over a number of years with people who have dementia, people with learning disabilities, and people who have both learning disabilities and dementia.

A sensory story partners concise text, typically fewer than ten sentences, with rich and relevant sensory experiences that engage the focus person or group. The narrative aspect of the story can be accessed through the words alone, the stimuli alone, or a combination of both. They can be appropriate to any age of person and the reduced text appeals to those who still use language confidently as much as it does to those for whom language now poses more of a problem.

Sensory stories can be used in many different ways, such as:

• simply enjoying sharing a story together
• using a story to orientate someone to a hospital visit
• using a story to connect someone with a piece of their personal history
• using stories to engage people in activities and explore their opinions about their own sensory worlds
• building and reinforcing new memories
• gaining satisfaction from achieving small tasks, such as doing up a button, unscrewing a nut or putting a coin in a slot

The ‘Sensory Projects’ website offers a growing library of sensory stories, all created from everyday household objects or items that can be purchased very inexpensively (see http://www.thesensoryprojects.co.uk/guides). The sensory stimuli have been chosen based on experience of what is likely to engage people and the stories are accompanied by activity ideas to explore. (Some of the guides and stories are free to download and there is a charge for others, as there is for the training days offered.) More ideas are shared freely through social media.

For further information, contact Joanna Grace, founder of The Sensory Projects: [email protected]

1. Chapman M, Lacey H, Jervis N. (2017) British Journal of Learning Disabilities, 1 to 12 ↩