An exploration of the UK unpaid carer's world

Making our health and care systems fit for an ageing population     

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This report published by the King’s Fund in 2014 sets out a framework and tools to help local service leaders improve the care they provide for older people.

The numbering system on this page does not correspond to that in the report.  

Citation sources have been removed.

The report predates the first DMC which opened in November 2015 here   23 September 2015 here.

  1. Key messages
  2. Goal
  3. Where dementia is present, the degree of frailty usually corresponds to the degree of dementia
  4. Providing good care for people with dementia
  5. Key issues include
  6. Improving end-of-life care for people with dementia 
  7. A coordinated approach to end-of-life care

1      Key messages

Improving services for older people requires us to consider each component of care, since many older people use multiple services, and the quality, capacity and responsiveness of any one component will affect others. The key components we have set out in this paper ((referring to dementia)) are: 
  1. healthy, active ageing and supporting independence

  2. living well with simple or stable long-term conditions 

  3. living well with complex co-morbidities, dementia and frailty

  4. rapid support close to home in times of crisis  

  5. choice, control and support towards the end of life 

  6. integration to provide person-centred co-ordinated care

2       Goal

Health and care services should support older people with complex multiple co-morbidities, including frailty and dementia, to remain as well and independent as possible and to avoid deterioration or complications.  p 15

  1. Dementia is progressively common in older age, affecting 1 in 6 people over 80 ...

  2. There is considerable under-diagnosis of dementia compared with expected rates . . . 

  3. Dementia often complicates multiple co-morbidities or frailty.
  5. It has been estimated to cost the public purse more than heart disease, stroke and cancer combined.  p 15

3       Where dementia is present, the degree of frailty usually corresponds to 
         the degree of dementia:

  1. Mild dementia – includes forgetting the details of a recent event, though still remembering the event itself, repeating the same question/story and social withdrawal.

  2. Moderate dementia – recent memory is very impaired, even though they seemingly can remember their past life events well. They can do personal care with prompting.

  3. Severe dementia – they cannot do personal care without help  p 17

4      Providing good care for people with dementia

  1. Dementia is a particularly important issue, affecting 800,000 people in the UK already,with this figure projected to double over the next 20 years. ..

  2. In England, there is now a National Dementia Strategy link added ... backed by a number of incentives and outcome measures, and by the collaboration of more than 50 organisations in the Dementia Action Alliance. link added  Many more than 50 organisations here 

  3. Local services leaders must have clear plans for diagnosis, care and support for people with dementia, and monitor progress against national guidelines. 

5     Key issues include:

  1.  providing accurate early diagnosis, information and support for people with dementia and their carers when the condition begins to cause problems that are life-limiting ...

  2. ensuring that drives to increase diagnosis rates are combined with ensuring adequate capacity in support services, including specialist old age psychiatry services

  3. reducing antipsychotic prescribing...

  4. providing training and education to carers of people with dementia in how to support someone with that condition and how to navigate the care system   p 19

6        Improving end-of-life care for people with dementia 
  1. The particularly poor end-of-life care experienced by people with dementia can be the result of either too much intervention (such as tube feeding and the use of restraints) or too little (inadequate pain control, malnutrition and dehydration, and inadequate emotional and social support) ...

  2. Reasons for this include the difficulty of identifying when people with dementia enter the end-of-life phase, and difficulties in communication, which make it difficult to accurately assess and treat pain, and to ascertain the patient’s wishes and preferences. 

  3. Too often, localities develop strategies for the care of people with dementia in isolation from strategies for end-of-life care ...

7        A coordinated approach to end-of-life care ... should include the following elements.
  1.  Advance care planning conversations happening with people with early stage dementia so that their preferences can be expressed before their condition deteriorates...

  2.  Staff caring for people with dementia should be trained in end-of-life care competences, and vice versa. 

  3. Care co-ordinators for people with dementia such as Admiral Nurses and GPs should be fully involved in co-ordinating the person’s end-of-life care. 

  4. Multidisciplinary guidelines specific to people with dementia should be applied, as they have been shown to result in a decrease in antibiotic prescribing and an increase in the use of pain relief in the last two weeks of life.  p 51 

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