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New clinical guidance to support patients with dementia

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Dementia is a progressive condition characterised by the widespread impairment of mental function. It is a feature of different physical illnesses, most commonly Alzheimer’s disease, but other forms include vascular dementia, fronto-temporal dementia, dementia with Lewy bodies, and a huge variety of rarer forms. Symptoms can include memory loss, language impairment, disorientation, personality and behavioural changes, and psychiatric symptoms such as apathy, depression or psychosis.

Abstract

VOL: 102, ISSUE: 50, PAGE NO: 23

Neil Hunt, PGCE, BA, CQSW & DipASS, is chief executive, Alzheimer’s Society

Dementia is a progressive condition characterised by the widespread impairment of mental function. It is a feature of different physical illnesses, most commonly Alzheimer’s disease, but other forms include vascular dementia, fronto-temporal dementia, dementia with Lewy bodies, and a huge variety of rarer forms. Symptoms can include memory loss, language impairment, disorientation, personality and behavioural changes, and psychiatric symptoms such as apathy, depression or psychosis. More than 750,000 people in the UK have dementia, and with an ageing population this is expected to rise to 1.8 million by 2050 (Alzheimer’s Society, 2004). It primarily occurs in older people: the prevalence rate among those aged 70-79 is estimated to be one in 20, and for the over-80s it is one in five (Alzheimer’s Society, 2004). However, the condition can affect people of all ages, and it is estimated that there are around 18,000 people under 65 with dementia. NICE and the Social Care Institute for Excellence have jointly published a clinical guideline on dementia (NICE/SCIE, 2006). The guideline was produced simultaneously with the controversial NICE technology appraisal on the four leading Alzheimer’s drugs (donepezil, galantamine, rivastigmine and memantine), which recommended a partial withdrawal of the drugs from the NHS. This could now be subject to a judicial review following severe criticism. Specialist services
One of the recommendations is that memory assessment services (provided by a memory clinic or community mental health team) offering assessment, diagnostic, therapeutic and rehabilitation services should be the single point of referral for all people with a possible diagnosis of dementia. This is important as, in the wake of the decision to withdraw drugs in the early stages of Alzheimer’s, there are fears that referral to specialist services will drop off due to non-availability of treatment. This recommendation should help counter these concerns. Hospital care
Much of the guideline is dedicated to hospital care. This is vital as the Royal College of Psychiatrists (2005) has estimated that in a typical general hospital over 20% of inpatients will have dementia - and they often experience variable standards of care. A common complaint is that hospital staff do not understand the needs of people with dementia. This is partly borne out by research on outcomes for people with dementia admitted to hospital. Holmes and House (2000) found that length of stay for those with dementia undergoing hip surgery was twice the average. Their risk of death after six months was found to be 2.5 times higher. The guideline recommends that trusts plan and provide services to address the physical and mental health needs of people with dementia using acute hospital facilities. Many people report that other conditions are not treated when people with dementia are in hospital and this is associated with the inability to communicate need. These difficulties can be overcome, however, and the recommendations on non-discrimination make this a positive requirement. Those with dementia must have the same access to healthcare as anyone else. Staff must ensure that non-dementia health issues are addressed. This should be aided by another key recommendation relating to hospitals - that all people with known or suspected dementia using inpatient services are assessed by a liaison service specialising in dementia. Liaison services should also provide training and consultation for staff. Dementia care training
The guideline makes a welcome recommendation that all staff working with older people have access to training in dementia care (see Box). Behaviour
People with dementia may experience a range of non-cognitive behaviours. These may include ‘behaviour that challenges’, such as aggression, wandering, hoarding, sexual disinhibition and disruptive vocal activity. The guideline states that a comprehensive assessment of likely causes of these symptoms should be undertaken as soon as possible after they develop and strategies should be put in place to cope with them. The assessment should investigate: - Possible physical health complaints; - Depression; - Undetected pain; - Side-effects from medication; - Psychosocial factors; - Physical environmental factors. In terms of treatment, a non-pharmacological approach is recommended in the first instance, with therapies including aromatherapy, music therapy, multisensory stimulation and massage. People respond differently to particular treatments and staff should monitor this and adapt accordingly. There are strict limits on the use of antipsychotics that are not licensed to treat dementia and can have dangerous side-effects such as increasing falls and strokes. Despite this, around 40% of people with dementia in care homes are prescribed them (Margallo-Lana et al, 2001). Fossey et al (2006) suggested that at least half of antipsychotic prescriptions were unnecessary and could be reduced drastically if staff were trained adequately in managing behaviour that challenges. The guideline recommends antipsychotics should only be used in the most severe cases, where other interventions have failed, and their use should be closely monitored. It also states that health and social care staff should be trained to anticipate and manage behaviour that challenges. Palliative care
The guideline also recommends a palliative care approach for people with dementia, building on recent research (for example National Council for Palliative Care, 2006) suggesting that models of care utilised in cancer can be applied in dementia. Palliative care is defined as the active and holistic care of patients with advanced, progressive illness. Management of pain and other physical symptoms, as well as provision of psychological, social and spiritual support, is vital. The overall goal is to achieve the best quality of life for patients and families. Guaranteeing the same access to palliative care services for people with dementia will be a challenge, not least because of the difficulties of identifying the terminal stage of dementia. A great deal of support will also be required in meeting the recommendation that people be allowed to die in a place of their choosing. Research suggests that only 19% of people with dementia die in their own homes, with almost all the remainder in long-term care or hospital (McCarthy et al, 1997). The guideline recommends staff training should cover palliative care. There are also recommendations on nutritional support and implementing people’s wishes around resuscitation, which staff need to be aware of. Younger people
The guideline has fallen short of the expectations of people in some areas. For example, there is only a single, general recommendation dedicated to younger people and the guideline fails to give a clear lead to practitioners on how to tailor services in this area. Conclusion
The guideline is the first step in developing the best possible care for people with dementia and their carers. Professional staff, from social workers to hospital staff and HCAs, will now all play a part in turning these recommendations into reality. Subjects recommended for dementia training
- Symptoms of dementia - Subtypes - Progression of the disease - Administering medication - Dignity and person-centred care - Communication skills - Adult protection procedures - Palliative care

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