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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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78 Dementia and People with Intellectual Disabilities Section 15 – Palliative care and end of life issues Dementia is a progressive and, at present, terminal illness. Its course, whilst varying in detail from person to person, is by definition associated with the progressive loss of skills and the ability to communicate, ending in a final stage where the person becomes completely dependent on others for their every need. As the illness progresses, so it becomes harder for others to ascertain the wishes of the person suffering from dementia and this is likely to be particularly the case when the person has pre-existing intellectual disabilities. There is much evidence that historically, and currently, people with intellectual disabilities experience barriers in accessing quality health care for serious illness and underuse palliative care services.

For these reasons preparing for the end of life and taking a palliative care approach is of importance from the time of establishing a diagnosis onwards. Forward planning concerning these issues needs to be embedded in the person-centred plan. (See Section 7 – Breaking the News).The generally fairly long course of dementia allows time for the person him/herself and for others to prepare and to ascertain how they wish to be supported and to plan for how their health and well-being will be maintained and for how they will be supported at the end of life and when dying.

15.1 End of Life strategy End of life issues have been addressed significantly over the last five years in all areas of Britain. Strategy documents in England, Scotland, Northern Ireland, Ireland and Wales are consistent in the information, guidance and imperatives they give concerning the approach to palliative and end of life care and they all stress that this should focus on the person rather than the disease and aim to ensure quality of life for those living with an advanced non- curative condition.

For people with intellectual disabilities there is now a strong emphasis on involving them in their end of life care as for all other aspects of their life. This is made explicit in Improving the Health and Well-being of People with Intellectual Disabilities: An evidence-based commissioning guide for clinical commissioning groups (Learning Disabilities Observatory et al., revised 2013) which states that people with intellectual disabilities should be able to have the same end-of-life care planning and access the same palliative care services as everyone else, as this contributes to effective and coordinated care and a good death. The Route to Success in End of Life Care – Achieving quality for people with intellectual disabilities is a practical guide to improving end of life care for people with intellectual disabilities, within the NHS National End of Life Care Programme (2011). The NICE Quality Standard for End of Life Care (2012a) makes it clear that it is now an agreed standard that people with intellectual disabilities should receive the same palliative and end of life care as the rest of the population.

In England the Department of Health End of Life Strategy (DH, 2008b) set out the key areas for action to ensure that people have excellence in end of life care. This included developing strong links with specialised end of life services, e.g. hospices, palliative care services, and admiral nurses.

Guidance on their Assessment, Diagnosis, Interventions and Support 79 NICE Quality Standard for End of Life Care (2012a) covers all settings and services in which care is provided by health and social care staff to all adults approaching the end of life and.

also covers support for the families and carers.

15.2 Addressing end of life issues The approach advocated by both the DH (2008b) and NICE (2012a) is a holistic one which addresses psychological and physical needs, social and practical needs and spiritual and religious needs. It also gives guidance on access to specialist palliative care, care of the body after death and support with bereavement. For all areas it specifies cultural sensitivity and dignity and explicitly states that a person should be offered spiritual and/or religious support appropriate to their needs and preferences.

Health and social care professionals are required to act to identify people approaching the end of life in a timely way and to give them and their family and carers opportunity to discuss, develop and review a personalised care plan for current and future support and treatment. The treatment plan is for symptom management and for current and anticipated physical and specific psychological needs. The care plan needs to outline personalised support for their social, practical and emotional needs, appropriate to their preferences, and should aim to maximise independence and social participation for as long as possible. There is a focus on essential services being available and accessible at all times to those approaching the end of life who need them.

This includes people approaching the end of life receiving specialist palliative care if their usual care team are unable to relieve their symptoms adequately. It is emphasised that people should be offered this care in a timely way at any time of day or night.

The NICE Quality Standard was updated in late 2013 following the review of the Liverpool Care Pathway and the subsequent announcement of the phasing out of this pathway. There is now a new approach and new priorities to looking after people who are dying, launched by the Leadership Alliance for the Care of Dying People (LACDP). These priorities state that decisions about care and treatment are to be made in accordance with the needs and wishes of the person and should be reviewed and revised regularly, communication between staff and the person who is dying should be sensitive, the dying person is to be involved in decisions about their care, people important to the dying person are to be listened to and their needs respected, and that care should be tailored to the individual and delivered with compassion.





It is clear that good practice in dementia care for people with intellectual disabilities requires working with the individual with dementia, their families and carers from an early stage concerning palliative and end of life care and that this means being aware of and taking into consideration a range of factors in a person’s life including their personal history and preferences, their family and other relationships and their cultural and religious background with particular reference to ideas and beliefs about serious illness, dying and death.

Good practice guidance also states that people in significant relationships to the person who has died need to be supported in their loss and bereavement and peers and coresidents with intellectual disabilities need to be included in interventions that give support after the person’s death.

80 Dementia and People with Intellectual Disabilities As new problems arise there occurrence should not be a surprise and should have been anticipated. In the early stages of dementia the issues listed below should be considered as these will all become relevant towards the end of the illness or at the person’s death. The individual with intellectual disabilities and dementia should always be involved whatever their capacity. If they lack capacity or their capacity diminishes then it will be necessary for the appropriate professionals to make Best Interest decisions within the context of the Mental Capacity Act (2005). For complex and serious decisions or where there are conflicts concerning treatment, for instance between the family and the medical team, it will be necessary to involve an Independent Mental Capacity Advocate (IMCA) and the Court of Protection.

Early consideration needs to be given to:

An understanding of where, how and by whom the person would like to be supported I towards the end of their life and whether he/she would like to appoint someone to make healthcare decisions on his/her behalf when he/she no longer has the capacity to do so.

Future management of financial affairs such as the appointment of a lasting power of I attorney for property and affairs or guardianship or appointee arrangements The making of a will.

I An understanding of the person’s preference with respect to the use of or I withholding of more invasive treatments in the advanced stages of dementia when he/she will no longer have the capacity to consent. These may include the use of artificial nutrition and hydration, ventilation, and the treatment of infections. If, at an earlier stage of the illness, the person has the capacity to do so they may be supported to make an advanced statement with respect to these matters. As noted, the Liverpool Care Pathway is no longer in place and the approach and priorities outlined by the LACDP (LACDP, 2014), which emphasises that the person who is dying and the people important to the person must always be involved in decisions about care and treatment, should be followed Funeral arrangements, again in discussion with the person and the people important I to them.

15.3 Palliative care and the role of the palliative care team It is important to develop working partnerships and to have close collaboration between different health services and a mutual understanding of philosophies of care including professionals in intellectual disabilities services understanding the role and timing of palliative care in terms of access to specialist support and appropriate symptom management. This needs to include considerations about getting support in the home so that unnecessary hospital admissions can be avoided. The local intellectual disabilities hospital liaison nurse can be very important in promoting joint working. It is also helpful to have a clinician within intellectual disabilities services focusing on palliative and end of life care who can promote this collaboration and lead training within their services about end stage dementia and the role of palliative care.

The nature of dementia makes it difficult to predict whether a person is reaching the end of their life, and this can lead to difficulties in terms of access to palliative care services.

Guidance on their Assessment, Diagnosis, Interventions and Support 81 The aims of this approach are to support quality of life, to help the person die with dignity and without pain and in a place of their choosing and to provide support to relatives and friends to help them prepare for the death.

The following are areas that may require particular attention towards the end of the

person’s life:

Eating and drinking: People should be supported and encouraged to eat and drink by mouth for as long as possible, with specialist advice being obtained concerning any feeding and swallowing difficulties from multidisciplinary team professionals particularly speech and language therapists, occupational therapists and physiotherapists (concerning seating and posture) and also from dieticians. Weight loss is common in late-stage dementia. Nutritional support, including artificial (tube) feeding should be considered if dysphagia is thought to be a transient phenomenon.

NICE guidance (2013) does not recommend that such artificial means are used in those with severe dementia for whom dysphagia or disinclination to eat is a manifestation of dementia severity. As specific ethical and legal principles apply with respect to withholding or withdrawing nutritional support expert advice should be sought if there is any lack of clarity or disagreement in this area. Further information can be found in Section 14.

Resuscitation: It is generally considered that cardiopulmonary resuscitation is unlikely to succeed in cases of cardiopulmonary arrest in people with end stage dementia. For those people who have retained their capacity to make a decision on this matter, it is for them to decide whether or not to agree to resuscitation if it were needed. For those who now lack the capacity to make such decisions, any wishes expressed in a valid and applicable advanced decision to refuse treatment must be respected if the circumstances are applicable. The policies and procedures set out in the Mental Capacity Act 2005 (or similar legislation in other jurisdictions) should be followed.

Pain relief: Unexplained changes in behaviour or evidence of distress in a person with dementia may be indicative of underlying pain. The possible cause for pain needs to be investigated and necessary treatments undertaken and both pharmacological and non-pharmacological approaches to pain relief considered.

Posture: Management of posture is important in order to optimise remaining abilities and prevent the development and/or progression of secondary complications such as pain, fatigue, muscle shortening, joint deformity, respiratory complications and pressure ulcers. There needs to be assessment of postural management equipment needs such as standing aids (where appropriate), specialist seating provision and sleep systems. Good postural management can also facilitate safe eating and drinking and improve respiratory function.

Resources: Accessible booklets are available to help people with intellectual disabilities plan their end of life care, e.g. When I Die, Sunderland People First in association with the PCPLD Network (Palliative Care for People with Learning Disabilities). The network is a voluntary organisation made up of people with intellectual disabilities and palliative care professionals concerned by their experience that people with intellectual disabilities who were facing a life-limiting illness did not seem to access the same services or receive the same quality of service as the rest of the population.

This group also offers other useful resources 82 Dementia and People with Intellectual Disabilities Making a Will, an accessible leaflet for people with intellectual disabilities concerning writing a will, is available from Mencap (2014).

Key points Preparation for palliative and end of life care should be ongoing as the dementia I progresses from diagnosis onwards and embedded in personalised plans for care and support at every stage.

People with intellectual disabilities must be able to have the same end-of-life care I planning and access the same palliative care services as everyone else.



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