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«Faculty for People with Intellectual Disabilities Dementia and People with Intellectual Disabilities Guidance on the assessment, diagnosis, ...»

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All care should be provided in accordance with the provisions of the Mental I Capacity Act. Care includes medical care, physical care and psychological and emotional care of the person, and psychological and emotional care of family, friends and peers, and carers and staff, and this needs to be delivered with cultural sensitivity and where appropriate, religious support.

Partnership working and close collaboration between professionals in intellectual I disability and other health services, particularly palliative care, is very important in terms of ensuring appropriate access and timing to specialist support and appropriate symptom management. A mutual understanding of philosophies of care in these services needs to be developed.

Guidance on their Assessment, Diagnosis, Interventions and Support 83 Section 16 – Capable commissioning for people with intellectual disabilities and dementia Commissioners of health and social care services are now far more aware of the increase in the prevalence of dementia in the general population, but it is still unclear about their knowledge and expertise in relation to commissioning services for people with intellectual disabilities and dementia, even though guidance was first distributed to commissioners in 2001 (Turk et al., 2001). As is the case post-Winterbourne, there is a need for local services and local competent teams who have expertise in working with people with intellectual disabilities who develop dementia.

Commissioners of health services need to be clear about the care pathway for the assessment, diagnosis, interventions and support for people with intellectual disabilities who develop dementia from primary care, through to appropriate secondary care services, and on to palliative care services. In practice, good quality care will involve active partnership-working between intellectual disability services, older people’s services, primary and secondary health care, palliative care and social care. These areas should develop an integrated dementia strategy for the care of people with intellectual disabilities and dementia. This should involve the development of an integrated care pathway involving all relevant agencies. Specialist health professionals e.g. speech and language therapists, physiotherapists, occupational therapists, dietitians, community intellectual disabilities nurses are all essential partners in providing excellence in care.

Commissioners of social care need to recognise that dementia is by definition a deteriorating condition, and that peoples’ needs will increase over time, and therefore increased and timely funding will be needed to ensure safe practice. This will inevitably involve the funding of waking night staff as the dementia progresses. Best practice is that people with intellectual disabilities should receive their residential care within the intellectual disabilities arena rather than in generic services for people with dementia, as the quality of the services gives people the best opportunities for a good quality of life for both their intellectual disabilities and their dementia. There will need to be efficient processes and understanding in place to ensure that Continuing Healthcare Assessments are undertaken promptly and funding agreed as needed.

Staff involved in assessment, diagnosis, interventions and support need to be trained in dementia care and be able to offer both holistic and specialist assessments and a range of interventions aimed at meeting the needs of people with intellectual disabilities and dementia. Care managers have an essential role to play in ensuring that services are actively monitored to ensure that they are responsive to the changing needs of the person.

People with intellectual disabilities and dementia should have access to regular reviews (monthly–six monthly depending on the rate of deterioration) by an identified care manager.

End of life care needs to be planned in advance, using the same principles and services available to the general population. Good partnership-working with palliative care services is essential, both to support the person and the carers (see Section 15).

84 Dementia and People with Intellectual Disabilities

16.1 What are the elements of an excellent service?

Commissioners will want to ensure that there is:

Demographics are known, including having a database of all adults with intellectual I disabilities which includes identification of people with Down’s syndrome and those in out-of-area placements.

A multi-agency dementia strategy.

I A multi-agency care pathway for assessment, diagnosis, interventions and support of I people with intellectual disabilities who develop dementia.

A multi-disciplinary approach to assessment and diagnosis and support.

I Prompt access to assessment and diagnostic services including baseline assessment for I people with Down’s syndrome by the age of 30.

Person-centred dementia care.

I Effective care management and review system.

I Prompt access to the full range of medical, psychological, therapeutic and social I interventions.

All living and day service environments are dementia friendly.

I The person is supported to remain in their familiar home with additional supports I provided in a timely manner.

Support is available to family carers and service providers.

I There is a capable trained workforce able to deliver excellence in dementia care.

I End of life care follows the requirements of the National End of Life Strategy.


16.2 What should the commissioners expect as outcomes of an excellent service?

Increase in prompt differential diagnosis of the person’s difficulties.

I Increase in other conditions being treated promptly.

I Increase in accurate diagnosis of dementia.

I Reduction in behavioural difficulties.

I Increase in quality of life indicators for the person.

I Reduction in moves to other placements.

I Reduction in the need for emergency one-to-one cover.

I Reduction in out of area placements.

I Increased carer support and satisfaction.

I Reduction in staff stress.


16.3 Potential risks if services are not available/not effective Increased costs of one-to-one, new in area or out of area placements.

I More complaints.

I Potential safeguarding issues.

I Increase in behaviours leading to abuse or harm to self and others.

I Carer breakdown.

I Key points Each area should develop a dementia strategy and integrated care pathway to I support the provision of high quality assessment, intervention and care for people with intellectual disabilities who develop dementia.

Guidance on their Assessment, Diagnosis, Interventions and Support 85 Section 17 – Capable support Excellence in dementia care for people with intellectual disabilities and dementia is underpinned by the knowledge and skills of the people who support them, and their ability to continuously adapt to the person’s changing needs.

17.1 Family carers Family carers need specific emotional and practical support. Many family carers find the diagnosis of dementia traumatic, as it may bring back emotions surrounding the birth, life expectancy and disability of the person. Furthermore, many families will also have prior experiences of family and friends being diagnosed with dementia and thus will have ideas about the journey ahead. Where the family are the main carers, they must be offered a comprehensive Carer’s Assessment. Many carers, particularly the parents of people with Down’s syndrome, may themselves be at risk of developing dementia or other age related conditions. Often diagnosis of dementia comes at a time when family carers are themselves reaching a time when they are requiring more support due to their own ageing.

Services need to be sensitive to the needs and beliefs of families, and to see things from their perspective. Some carers believe that it is their duty to care and may find it very difficult to accept support and help into their own home, or try to cope even when the person has needs that are greater than they can cope with. Carers need to have prompt access to appropriate information about supports and resources available, including short breaks (both within and away from the home), individualised budgets and direct payments, and aids and adaptations included assistive technology. They need to be involved in assessments and review meetings, even when their family member does not live with them.

Appropriate use of the National Framework for Continuing Health Care (DH, 2012b) should be made to ensure that funding of health and social care is fair and transparent.

Staff need to be very sensitive to the small number of carers who cannot cope with seeing their family member deteriorating, and may opt out of being involved. Life Story work is one positive way of enabling family carers to maintain a relationship or to stay involved in the person’s care. Carers often need a great deal of support to prepare for the eventual death of the person they are supporting. Advanced planning can help carers to be involved in sharing future wishes, and to talk through issues and plan for the last years/months of life.

17.2 Paid care staff characteristics Staffing numbers need to be appropriate to ensure the person is safe and that staff are able to meet the person’s changing needs. In practice, this means that staffing levels will need to increase as the dementia progresses. By mid-stage dementia, people usually require waking night staff to ensure safety, and often an increase in staffing levels to manage self care and to respond to the distress that people with dementia often exhibit.

Excellent dementia care can only be provided by a consistent staff group. Agency staff, 86 Dementia and People with Intellectual Disabilities unless very well known to the person, should always be avoided as this can add to the person’s stress level. Staff will need to have access to regular training and resources to meet the varied demands of caring for people with intellectual disabilities and dementia. There are a range of resources available including the Resource Pack for Carers of Adults with Down’s Syndrome and Dementia (Dodd et al., 2009), the Down’s Syndrome and Dementia Workbook for Staff (Dodd et al., 2006), Supporting Derek (Watchman et al., 2010) and a range of DVDs from the Down’s Syndrome Association. Dementia training may also be offered by local Community Intellectual Disabilities Teams. In our experience, the best care is provided by staff who are flexible in their approach, deal with changing situations with compassion and humour, cope with the person’s declining abilities and can reach out to the person.

Staff need support to cope with the deterioration in the person with intellectual disabilities and dementia and to prepare for the eventual death of the person they are supporting.

Research has indicated that caring for people at late stage of dementia raises specific issues related to their readiness to respond to end of life needs; fear of swallowing difficulties;

and environmental concerns and ageing in place. See Section 14 for more details.

Staff are the key component in ensuring that people who live in any form of supported living or residential provision can ‘live well’ with dementia. The timing of training is important. It is important that a service is ‘dementia-ready’ before their residents begin to develop symptoms of dementia. Staff need to have a thorough understanding of the person, of dementia and the consequences of having dementia, and then how to adapt their care as the dementia progresses. This can only be achieved by having a clear framework to underpin the training and support provided to services. Evidence suggests that where staff had received relevant and targeted training that was practice-based and person-centred, they displayed an appreciable difference in confidence, quality of care and support and they also reported reduced stress levels.

Evaluation of training models used with staff who are supporting people with intellectual disabilities with other comorbid conditions suggest that the best outcomes occur when there is interactive training which involves the development of care plans; follow-up consultation and support for implementing care plans; and where there are changes in how the organisation understands and responds to people with dementia.

The importance of developing a shared vision on which to build practice is now wellrecognised as the pre-requisite of good care. Without this solid foundation, values, expectations and approaches are likely to differ greatly amongst staff. This will ultimately generate conflict and frustration and will in turn place unnecessary demands on the already confused person with intellectual disabilities and dementia. Sheard (2013) recently introduced the concept of ‘mattering’ which ‘brings together the core elements of emotional care, skills, quality of life and environment with the culture of a shared relaxed community, thereby evidencing that individuals matter’. He emphasises that developing the emotional competency in staff is the only foundation on which progress in dementia care will be sustained and on which dementia care training will finally deliver effectiveness (see Sections 9 and 10).

Guidance on their Assessment, Diagnosis, Interventions and Support 87

17.3 Delivery of training to staff Dementia awareness training is often delivered to groups of staff from a range of services, often with junior staff attending. The only advantage of this model is that it allows staff to meet with colleagues from other settings and to learn from each other. However, this approach rarely results in change in practice once the staff member returns to their care setting. The person who attended the training has to try to ‘sell’ their knowledge and skills to the staff team, often with little commitment from management to implement changes.

Even when this person is designated the ‘dementia champion’, this rarely results in the needed change in staff knowledge across the whole staff team (Dodd, 2014).

Experience in training staff teams indicates that improving dementia care for people with intellectual disabilities and dementia requires a whole-system approach within staff teams.

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