Dementia Chapter

Presenting complaints

  • Patients may complain of forgetfulness, a decline in mental functioning or of feeling depressed, but they may be unaware of memory loss. Patients and staff may sometimes deny, or be unaware of, the severity of memory loss and other deterioration in function.
  • Staff or the patient’s solicitor may ask for help initially because of failing memory, disorientation and change in personality or behaviour. In the later stages of the illness, they may seek help because of behavioural disturbance, wandering or incontinence or an episode of dangerous behaviour.
  • Dementia may also be diagnosed during consultations for other problems, as staff may believe deterioration in memory and function is a natural part of ageing.
  • Changes in behaviour and functioning (eg poor personal hygiene or social interaction) in an older patient should raise the possibility of a diagnosis of dementia

Diagnostic features

  • Decline in memory for recent events, thinking, judgement, orientation and language.
  • Patients may have become apparently apathetic or uninterested, but may also appear alert and appropriate despite a deterioration in memory and other cognitive function.
  • Decline in everyday function, eg dressing, washing.
  • Changes in personality or emotional control – patients may become easily upset, tearful or irritable, as well as apathetic.
  • Common with advancing age (5% over 65 years, 20% over 80 years), (ref 1) very rare in youth or middle age.

Progression is classically stepwise in vascular dementia, gradual in Alzheimer’s and fluctuating in Lewy body dementia (fluctuating cognition, visual hallucinations and Parkinsonism), but the clinical picture is often not clear-cut.

Owing to the problems inherent in taking a history from people with dementia, it is very important that information about the level of current functioning and possible decline in functioning should also be obtained from an informant (eg relative who visits frequently or residential staff).

Tests of memory and thinking include:

  • the ability to repeat the names of three common objects (eg apple, table, penny) immediately and recall them after 3 minutes
  • the ability to identify accurately the day of the week, the month and the year and
  • the ability to give their name and full postal address.

A very short screening test is the Abbreviated mental test score.

Differential diagnosis

Examine and investigate for treatable causes of dementia. The common causes of cognitive worsening in the elderly are:

  • urinary tract, chest, skin or ear infection
  • onset or exacerbation of cardiac failure
  • prescribed drugs, especially psychiatric and anti-Parkinsonian drugs, and alcohol and
  • cerebrovascular ischaemia or hypoxia.

Less common causes include:

  • severe depression
  • severe anaemia in the very old
  • vitamin B12 or folate deficiency
  • hypothyroidism and hyperparathyroidism
  • slow-growing cerebral tumour
  • renal failure and
  • communicating hydrocephalus.

Sudden increases in confusion, wandering attention or agitation will usually indicate a physical illness (eg acute infectious illness) or toxicity from medication (see Delirium).

Depression may cause memory and concentration problems similar to those of dementia, especially in older patients. If low or sad mood is prominent, or if the impairment is patchy and has developed rapidly, see Depression.

Helpful tests include: MSU, full blood count (FBC), B12, folate, LFTs, TFTs, U&E, Ca2+ and glucose.


1 Eurodem Prevalence Research Group, Hofman PM, Rocca WA, Brayne C et al. The prevalence of dementia in Europe: a collaborative study of 1980-1999. Int J Epidemiol 1991; 20: 736-748.

Essential information

Essential information for the patient and primary support group

  • Dementia is frequent in old age but is not inevitable.
  • Memory loss and confusion may cause behaviour problems (eg agitation, suspiciousness, emotional outbursts, apathy and an inability to take part in normal social interaction).
  • Memory loss usually proceeds slowly, but the course and long-term prognosis varies with the disease causing dementia. Discuss the diagnosis, the likely progress and prognosis with the patient and, with patient permission, with his/her primary support group.
  • Physical illness or other stress can increase confusion.
  • Advise staff that the patient will have great difficulty in learning new information. Avoid placing the patient in unfamiliar places or situations
  • The supply of information on dementia for staff involved in care of the patient is essential.

Advice and support to the patient and primary support group

  • Seek patient permission to discuss a treatment plan with staff involved in the care of the patient and obtain their support for it. Regularly assess the risk (balancing safety and independence), especially at times of crisis. As appropriate, discuss arrangements for support in the establishment.
  • Consider contacting the patient’s solicitor, with patient permission, to discuss the possible application for release on grounds of ill-health.
  • Regularly review the patient’s ability to perform daily tasks safely as well as their behavioural problems and general physical condition.
  • If memory loss is mild, consider the use of memory aids or reminders.
  • Encourage the patient to make full use of their remaining abilities.
  • Encourage maintenance of the patient’s physical health and fitness through good diet and exercise, plus swift treatment of intercurrent physical illness.
  • Discuss the planning of legal and financial affairs. An information sheet is available from the Alzheimer’s Society.

A probation officer may be able to provide further information.


  • Try non-pharmacological methods of dealing with difficult behaviour first. For example, staff may be able to deal with repetitive questioning if they are given the information that this is because the dementia is affecting the patient’s memory.
  • Antipsychotic medication in very low doses (see BNF, Section 4.2.1) may sometimes be needed to manage some behavioural problems (eg aggression or restlessness). Behavioural problems change with the course of the dementia; therefore, withdraw the medication every few months on a trial basis to see if it is still needed and discontinue if it is not. Beware of drug side-effects (eg Parkinsonian symptoms, anticholinergic effects) and drug interactions (avoid combining with tricyclic antidepressants (TCA), alcohol, anticonvulsants or L-dopa preparations). Antipsychotics should be avoided in Lewy body dementia. (ref 1)
  • Avoid using sedative or hypnotic medications (eg benzodiazepines) if possible. If other treatments have failed and severe management problems remain, use very cautiously and for no more than 2 weeks; they may increase confusion.
  • Aspirin in low doses may be prescribed for vascular dementia to attempt to slow deterioration.
  • In Alzheimer’s disease, consider referring the patient to secondary care for an assessment and the initiation of anticholinesterase drugs (ref 2) depending on locally agreed policies.


1 Ballard C, Grace J, McKeith I et al. Neuroleptic sensitivity in dementia with Lewy bodies and Alzheimer’s disease. Lancet 1998; 351: 1032-1033.

2a Stein K. Donepezil in the Treatment of Mild to Moderate Dementia of the Alzheimer Type (SDAT). Report to the South and West Development and Evaluation Committee (DEC) No. 69, June. Bristol: NHS Executive, 1997.
b Rogers SL, Farlow MR, Doody RS et al and Donepezil Study Group. A twenty four week, double blind, placebo-controlled trial of donepezil in patients with Alzheimer’s disease. Neurology 1998; 50: 136-145. The limited number of studies available to date show that donepezil produces some improvement in a minority of patients with mild-to-moderate Alzheimer’s disease (defined as those with a mini-Mental State Examination score between 10 and 26). There is no evidence to date that donepezil has any effect on the non-cognitive manifestations of Alzheimer’s disease.


  • Refer to a specialist to confirm diagnosis in complicated or atypical cases.
  • Call a case conference with the relevant staff (eg probation officer, residential staff, occupational therapist, if available) to arrange the practicalities of managing the patient in the establishment.
  • Refer to a physician if there is complex medical comorbidity or a sudden worsening of dementia.
  • Refer to the psychiatric services if there are intractable behavioural problems or if a depressive or psychotic episode occurs.

If release is planned, work cooperatively with both probation or throughcare-planning officers to ensure that appointments with a general practitioner, specialist mental healthcare and socialcare are arranged, and that housing, money for food, clothes and heating are arranged.

For more detail on throughcare, see Managing the interface with the NHS and other agencies. See PSI 21/2001 for details of the Prison Service requirements about the provision of coordinated health- and socialcare to older people in prison.


Resources for patients and primary support groups

Alzheimer’s Society and CJD Support Network: 0845 300336 (helpline); 020 7306 0606 (office) (Support and advice to people with dementia of all kinds, ie not just Alzheimer’s, and their family and friends)

Age Concern England: 0800 009966 (freephone helpline: Monday-Sunday, 7 am-7 pm); 020 8765 7200 (office) (Information and advice relating to older people)

Age Concern Northern Ireland: 02890 245729

Age Concern Cymru: 02920 399562

Age Concern Scotland: 0131 220 3345

Help the Aged: 020 7253 0253

Counsel and Care: 020 7485 1550 (Monday-Friday, 10:30 am-12 pm, 2 pm-4 pm) (Advice and information on issues including residential care, for older people and their carers)

Benefits Enquiry Line: 0800 882200 (freephone) (For people with disabilities)

Carers’ National Association: 020 7490 8818; 0808 808 7777 (carersline: 10 am-12 pm, 2:30 pm-4 pm)

H Cayton, N Graham, J Warner, Alzheimer’s At Your Fingertips. Class, 1997 London. £11.95. A good book for patients and carers that answers commonly asked questions about all types of dementia.