“Dementia in the Community".
a. Dr Morgan started by affirming that it is possible to live well despite a diagnosis of dementia.
b. Dr Morgan then presented an overview of dementia, noting that it refers to disorders of cognition, including a decline in memory and orientation of time and space, as well as difficulties with planning, organisation, problem solving, and language. These symptoms are caused by loss of nerve cells due to disease, for which there may be more than 100 causes.
c. Dementia is very common and is experienced by 5% of those over 65 years and by 20% of people over 80 years. There are 812,000 cases in the UK, with several subtypes: Alzheimer's Disease - 62%, Vascular dementia - 18%, Mixed dementia – 10%, Dementia with Lewy Bodies - 5%, Other dementia including fronto-temporal dementia - 5%
d. Alzheimers disease has an insidious onset followed by progressive decline in cognition, which begins with short term memory problems and difficulty with language, recognition, and daily tasks. The brain changes, suffering atrophy and the development of plaques and tangles.
e. Vascular dementia has a variety of causes, an abrupt onset and stepwise deterioration, with a fluctuating course. Deficits may be patchy, with better insight, but more emotional symptoms.
f. Dementia with Lewy Bodies usually involves memory loss, problems with attention span, and Parkinsonian symptoms such as tremor, slowness, muscle stiffness, also visual hallucinations, fainting fits and “funny turns”.
g. Fronto-temporal dementia may start younger, with memory intact but with personality and behaviour changes, early loss of insight, loss of the capacity to empathise, and communication difficulties.
h. Some dementias can be treated, particularly those due to vitamin B1 or B12 deficiency, infections such as syphilis, endocrine abnormalities e.g. hypothyroidism, brain tumours e.g. meningiomas, normal pressure hydrocephalus, and injury with subdural haematoma (collection of blood).
i. The national agenda is led by NICE. There have been various national initiatives - Supporting people with dementia and their carers in health and social care. (2006); National dementia strategy (2009): National Dementia Declaration (2010) and the Dementia Action Alliance: Prime Minister's Challenge (2012): NICE quality standards – supporting people to live well with dementia (2013).
j. Dementia care in the community occurs in many settings, based on person centred care, targeted prevention programmes, early diagnosis and early treatment. Shared care practice involves supporting carers, supporting patient autonomy and independence, and managing crises. The cost of dementia care is very great, largely provided by families and friends. Two thirds of dementia sufferers live in their own homes and one third live alone, which brings the risk of isolation or abuse. Two thirds of people in care homes have dementia. Memory assessment services are increasingly community based and in some areas are moving more into primary care settings.
k. The NICE aim is for people to manage their own support as much as they wish, so that they are in control of what, how and when support is delivered to match their needs.
l. To prevent dementia, some risk factors can be controlled - high blood pressure, high cholesterol (hypercholesterolemia), diabetes, smoking, heavy alcohol use, physical inactivity. Other protective factors include educational attainment, improved workplace health in mid-life, supportive social interactions and lifelong learning and stimulation in later life, as well as care from services, carers and families. Action to tackle the social, economic, and environmental factors is important too.
m. Currently only 44% of dementia sufferers are diagnosed but diagnosis is important for patients, their families and carers, because it facilitates better understanding, improves access to medication, information and support, and allows better planning for future care. NHS England has prioritised dementia and aims to increase diagnosis to 60% of sufferers.
n. Basic dementia screening is completed in primary care with routine haematology, biochemistry tests (electrolytes, calcium, glucose, renal and liver function), thyroid function tests, serum vitamin B12 and folate level tests. Early referral to memory services is helpful. There are newly commissioned services in Hillingdon and Harrow. Medication is initiated by a specialist but most people then no longer require specialist input, so they are discharged back to primary care for community support.
o. In UK there are 670,000 carers of people with dementia. Families provide the majority of care, which is tiring and stressful, physically, emotionally and financially. This saves the UK over £8 billion a year. Carers should have early access to community based assessments, information and support groups and access to respite care to reduces the carer’s burden and distress.
p. Decisions must be taken about dementia patients continuing to drive, about arranging Power of Attorney and advanced directives to invoke later if needed, and about end of life care. Dr Morgan answered questions, assisted by Phil Bolland. Some audience concerns related to crisis support by CNWL but other concerns related to Social Services’ issues.
The speakers were thanked by Neville Hughes, who also praised the excellent CNWL carers’ course, from which he had benefitted, but then noted his long campaign to combat the lack of Admiral nurses in Harrow. His thanks to the speakers were endorsed by audience applause as the speakers left the hall.
Published in Community Health Services on 03 August 2014.