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Dementia Care Pathway - Overview

Please find below updates to this pathway -

(a) GPs encouraged to diagnose and treat dementia in primary care with support from the Community Mental Health Team, and

(b) When ordering a scan be sure to specify “Coronal CT-scan of the head” (Please see the CT page for available services and referral information)

Please click the relevant flowchart box to be taken directly to textual information.

                                     

Red Flags
  • Delirium (Sepsis, UTI, LRTI, constipation)
  • Substance misuse/withdrawal
  • Recent medication changes
Presentation

Suspect dementia if you become aware from the patient or from their family or carer(s) of any of the following:

  • Onset is usually gradual
  • Memory problems
  • Disorientation
  • Change in personality
  • Loss of emotional  control
  • Change in every day ability to function in their usual environment
Differential Diagnosis

The following can simulate dementia and need actively excluding:

Delirium (previously known as ‘toxic confusional state’) is generally a transient condition characterised by inttention or acute cognitive dysfunction of sudden or relatively sudden onset. If not recognised and treated appropriately, delirium can become a chronic condition.

  • 20% of patients over 65 when hospitalised will suffer from some for of delerium during their stay.

Particular pointers include:

  • Rapid onset, new recent problem or acute on chronic problem.
  • Visual hallucinations
  • Fluctuating alertness or frank confusion

Commonly seen triggers include:

  • Constipation
  • Metabolic derangement including
    • dehydration
    • hypo- or hypernatraemia
    • hypo- or hyperglycaemia
  • Pain
  • Immobilization (catheters or restraints)
  • Medications (for example, sedative hypnotics, narcotics, anticholinergic drugs, corticosteroids, polypharmacy)
  • Substance misuse (withdrawal of alcohol or other drugs)
  • Febrile illnesses including UTI, LRTI and others.
  • Other Intercurrent illness including iatrogenic complications, severe acute illness, anaemia, dehydration, poor nutritional status, fracture or trauma, HIV infection)
  • Recent major surgery
  • Emotional distress
  • Terminal illness
  • Change of environment

Less common triggers include:

  • Sensory impairment (hearing or vision, including Charles Bonnet syndrome - complex visual hallucinations in a person with partial or severe blindness);
    • Charles Bonnet syndrome (CBS) involves visual hallucinations due to eye disease, usually associated with a sharp decline in vision. Interesting features of the condition are the complexity of the hallucinations and the fact that there is some consistency between people in the types of images seen, most notably images of faces, children and wild animals. Please follow this link to further information on CBS.

  • Sustained sleep deprivation

  • Substance misuse and/or sudden drug or alcohol withdrawal including Korsakoff’s syndrome.

See the Alcohol and Drug Misuse sections for further information.

  • Acute neurological diseases (for example, acute stroke [usually right parietal], intracranial hemorrhage, meningitis, encephalitis including sporadic CJD).

Consider psychological illness, including depression, if:

  • Increase in somatic symptoms
  • Lowered mood
  • Decreased energy
  • Decreased pleasure in usual activities

Mild Cognitive Impairment  (MCI)

In MCI there is subjective cognitive deficiency with no decrease in actual cognitive function. However:

  • 60% of those diagnosed with MCI progress to dementia within 5 years and therefore need to be regularly reviewed

Alzheimer’s Disease

Key features:

  • 50-70% of cases.
  • Gradual development often over years.
  • Common early symptoms of Alzheimer's include repetition, getting lost, difficulties keeping track of bills, problems with cooking especially new or complicated meals, forgetting to take medication, and word-finding problems. However, the essentials of personality tend to be retained.
  • The part of the brain most affected by Alzheimer's is the hippocampus. Other parts of the brain often also show atrophy, include the temporal and parietal lobes.

 

Vascular Dementia

Key features:

  • 25% of cases.
  • Symptoms relate to the site of the stroke(s).
  • History of cardiovascular disease.
  • Tendency to develop in a stepwise fashion.
  • Brain scan may show evidence of multiple different strokes of different sizes in different sites.

 

Mixed Vascular and Alzheimers Dementia

  • CT scan shows features of both conditions.

 

Lewy Body Dementia

Key features:

  • 15% of cases.
  • Relatively rapid progression.
  • Usually presents with associated > 6 months’ hallucinations and delusions and features of ‘Parkinsonism’ (tremor, rigidity, mask-like fascies).
  • Imaging may not be diagnostic, occipital hypoperfusion on SPECT scan or occipital hypometabolism on a PET scan are common findings.

 

Fronto-Temporal Dementia

Key features:

  • Typically presents with drastic personality change and language difficulty. Memory problems are not the main feature. Early social withdrawal and early lack of insight are characteristic.
  • Main variants:
    • Behavioural variant: typified by a change in personal hygiene, rigid thinking, poor insight, social withdrawal, often a drastic increase in appetite, socially inappropriate behaviour, apathy.
    • Semantic (language) or temporal variant: difficulty naming things eventually progressing to losing the meaning of objects as well (e.g. unable to identify likenesses or differences).
    • Progressive non-fluent aphasia (PNFA): principally problem in speech production, with difficulty in finding the right words, and particularly difficulty in the orofacial coordination required to speak. May eventually, use single syllable words or even become mute.

 

Progressive Supra-Nuclear Palsy (PSNP)

Key features:

  • A rare neurodegenerative disease characterized by early loss of up and down eye movements.
  • Usually commences with a vertical gaze palsy. A loss of both up and down movement is almost pathognomonic). Other key symptoms include balance problems, falling backwards, rigidity, slow movements, irritability, apathy, social withdrawal and depression. Frontal lobe signs such as perseveration, a grasp reflex and ‘utilization behaviour’ (the need to use an object once seen). Progressive difficulty eating and swallowing and eventually with talking is also common.
  • Imaging often shows midbrain atrophy.

 

Picks Disease

Key features:

  • A rare form of fronto-temporal lobe atrophy causing dementia in often younger patients, often presenting in their 50’s.
  • Presents typically with dementia and aphasia. Behavioural changes may include efforts to dissociate from family, inappropriate anxiety, impaired regulation of social conduct (tactlessness, dis-inhibition, misperception), passivity, low motivation, inertia, over-activity, pacing and wandering. The changes in personality help distinguish it from Alzheimer's.
  • Progresses over 2-10 years.

 

Corticobasal Degeneration

Key features:

  • Rare.
  • MRI typically shows asymmetrical posterior parietal and frontal cortical atrophy and sometimes atrophy of the corpus callosum.

  • Chronic subdural haematoma
  • Normal pressure hydrocephalus
  • Parkinson’s disease
  • Syphilis
  • Jacob-Creuzfeld disease
  • Glioma or lymphoma
  • Encephalitis and SSPE
  • Familial dementia and chromosomal disorders such as Downs Syndrome
  • MS
  • Chronic inflammatory conditions including sarcoidosis and SLE
  • Huntingdon’s disease
  • Others
Assessment

Please refer to Primary Care Dementia Diagnosis Check List

Excluding physical problems should precede excluding psychological followed by progression to a cognitive state assessment, leading to neuro-imaging and final diagnosis.

                                                                                              

The following assessment and investigations are recommended In order to rule out other conditions (above):

  • A history and examination tailored to help rule out most of the above conditions, use the Dementia ‘tab’ on ICE.
  • FBC, U&E, Calcium, LFT, B12, FA,T&H, HbA1C.
  • Other tests as appropriate, especially if rarer causes are being considered.

The 6-item Cognitive Impairment Test (6-CIT)

6-CIT is the Glos favoured assessment tool. There are several dementia assessment tools.

Interpretation of the 6-CIT score:

  1. Above 8: strongly suggestive of dementia.
  2. Below 8, but persistently complaining a poor memory:  may be indicative of dementia and such patients should be considered for further investigations – see below.
  3. Below 8: dementia unlikely, but consider repeating in the future.

Other tools

  • Mini-COG – a useful rapid screening tool if dealing with people on their own.
  • Score <= 3 suggests dementia.
  • GP-COG –if patient presents with family or cares this is a better rapid screening tool for use in primary care as the informant’s perspective is included in the assessment.
  • Score -  Patient assessment: 9/9 = normal; 5-8 = more information required; 0-4 = cognitive impairment.     Informant interview: 4-6/6 = normal; 0-3 = cognitive impairment.

Consider depression, dementia and other psychiatric conditions.

Depression

Geriatric Depression Score

  • The GDS is widely used in the assessment of the elderly, has been validated and has a  sensitivity of 92% and a specificity of 89%.

Screen for depression using the 4-Item Geriatric Depression Scale tool. This tool is also more suitable for patients with a poor attention span or with dementia.

Scoring: 2-4 suggest depression, 1 is uncertain and 0 suggests depression is unlikely.

If this test scores 2 or more, consider a more accurate assessment by using the 15-Item Geriatric Depression Scale tool.

Scoring: 0-4 is normal; 5-8 = mild; 9-11 = moderate; and 12-15 = severe.

For more information about the Geriatric Depression Scale please see the Education topic button on the right.

The image of choice from within primary care is coronal section CT-Scan (see the CT page for available services and referral information). This will exclude intracranial mass lesions such as brain tumours and also normal presure hydrocephalus. Features consistent with various causes of dementia may include:

  • Alzheimer's: The principal focus of degeneration is the hippocampus. Other parts of the brain often also show atrophy, include the temporal and parietal lobes.
  • Vascular dementia: Multifocal infarcts of varying sizes in different sites,
  • Lewy Body disease: Routine imaging may not be diagnostic. However, sophisticated scans vcan be helpful: SPECT scanning may show occipital hypoperfusion and a PET scan may show occipital hypometabolism.
  • Picks Disease: Fronto-temporal lobe atrophy may be seen.
  • Corticobasal degeneration: MRI typically shows asymmetrical posterior parietal and frontal cortical atrophy and sometimes atrophy of the corpus callosum.
  • Progressive Supra-Nuclear Palsy: Imaging often shows midbrain atrophy.
  • Normal pressure hydrocephalus:

Please see the 'Dementia diagnosis: choice of diagnostic pathways: 3 Tiers.'

When to Refer

Diagnosis and initial management

GPs are encouraged to make the final diagnosis of dementia, with multiprofessional support if needed, but this is often not required.

Any decisions made should always be based on the best interests of the patient and GPs should ask the patient whether they think it is Dementia?                                                     

                                                                 

 

Who to Refer for Diagnosis and Initial Management

After initial workup, please refer the following to the Memory Assessment Service:

  • Young patients (e.g. under 65).
  • Uncertainty of diagnosis or the best course of action.
  • Complex cases.

Please ensure that any referral includes a detailed history, together with all relevant investigation and neuroimaging results. In the case of neuroimaging, please also indicate where the scan was performed.

Key Point

A multi- professional group within Gloucestershire (2015) considered that for patients with severe memory loss, a referral to the Memory Assessment Service offers no added value to the patient and may actually cause additional distress. However, a decision to diagnose and manage within primary care should be based on the best interests of the patient, and discussed with the patient and carers.

Ongoing Care

Please see the Primary Care Guidance Sheet which includes contact information for;

  • Living Well - Social Prescribing
  • Concerns about memory
  • Diagnosis and support
  • When dementia is diagnosed
  • Maintaining well-being and living well
  • Managing acute and complex conditions
  • End of life and bereavement support

The advice below is consistent with the current Gloucestershire Joint Formulary (GJF) and their detailed prescribing sheets can be accessed through it:

Drug therapy has limited benefit in dementia and is frequently associated with paradoxical effects and can complicate an already difficult situation. However, although they should be used with care, drugs do have a definitive roll in the management of a number of problems.

  • Document that discussion to initiate drugs has taken place with carer, and where possible the patient.

 

To improve memory – Alzheimer’s disease only

They can help 40-70% of sufferers with a 6-12 month improvement in symptoms before decline sets in again. These patients can experience reduced anxiety, improved motivation, memory and concentration and an improved ability to cope with daily activities such as personal care, shopping and dressing. They are also felt to slow down disease progression to some extent.

  • They can be tried in patients with mixed picture Vascular/Alzheimer’s dementia.

 

Recommended by GJF

  • Donepezil – an anticholinesterase, prescribe only generically.
    • Avoid if pulse < 60. No need for ECG unless cardiac concern.
    • Common side effects: vivid dreams, diarrhoea.
    • Initiate at 5mg mane, on a trial basis.
    • If tolerated well, increase to 10mg after 4 weeks.
    • Continue more or less indefinitely, or until they are felt to be no longer of benefit.
    • Monitor at intervals.

 

Alternatives (GJF)

  • Galantamine – an anticholinesterase; originally Reminyl, but now available as a generic
  • Rivastigmine patches  - an anticholinesterase; available as patches which may avoid some of the GI side effects or oral administration. Originally Exelon, but now also available as a generic.
  • Memantine – an NMDA receptor antagonist recommended (NICE) for severe Alzheimer’s disease or in moderate disease where AChE’s are poorly tolerated. In the middle and later stages of the disease it can slow down the progression of symptoms, including disorientation and difficulties carrying out daily activities. It may also help with symptoms such as delusions, aggression and agitation. Originally Ebixa, but now available generically.
    • Monitor the patients BP if on Memantine.

 

Managing Anxiety

  • Depression and additional pathologies should be specifically sought.

Anxiety should be tolerated to some extent and wherever possible be managed by non-pharmaceutical means.

  • Medication is associated with a high frequency of unwanted and sometimes serious side effects.

 

Antidepressants

  • Antidepressants are much safer than antipsychotics, often worth a trial of Mirtazepine or Trazodone

 

Benzodiazepines

  • Benzodiazepine use in elderly patients is associated with falls and cognitive impairment.
  • Lorazepam – preferably for short term use only. It is powerful, short acting, with little hangover effect but tolerance can develop quickly

 

Antipsychotics

When antipsychotics (phenothiazines or atypicals) are used in elderly people with dementia, there is a clear increased risk of stroke and a small increased risk of death (click here for MHRA advice).

  • Sedation, Parkinsonism and non-specific decline should be watched for.
  • Reduced cognitive  function
  • Risk of falls and Parkinsonian effects
  • Increased risk of CVA’s (~3x) and Increased mortality rate (~2x)
  • Risks rise with length of course and higher doses.
  • Risks are even higher in Parkinson’s related dementia / Lewy body dementia.

 

If antipsychotics are necessary - only initially prescribe as a time-limited course.

  • Risperidone (GJF Recommended)
  • If longer term use considered, ensure the decision is based on consultation with individual, carers, secondary care and the outcome is documented
  • Prescribe at lowest effective dose.
  • Try withdrawing drug at intervals – see guidance below.
  • Use one drug rather than two if possible.

 

Withdrawal from Antipsychotic Drugs

  • Ensure that the drug is not being prescribed for other psychiatric  illness: If unsure, ask psychiatric  services to check this before reducing doses.
  • Try withdrawal at intervals – this is generally  successful.
  • Is the drug still needed? If unsure, try tapering doses off gradually  over 2-3 month period.

If behavioural symptoms re-emerge, consider using intermittent 6 week courses, recommencing only if needed.

Secondary care will initiate treatment and develop and agree a care plan, in most instances patients will be referred back to primary care for ongoing monitoring, with support from the Dementia Nurse and Advisor.

Once back in primary care, please review their care and ensure that no steps have been left out.

Once diagnosis is confirmed then consider treatment/further treatment

Gloucestershire Community Wellbeing Service (Social Prescribing) can be used to support patient and carers however it is best done through a Dementia Advisor who has the time and the knowledge to help the client)s to find the services they would like to make use of.

  • Agree/develop a care plan in association with your MDT
  • Ensure that monitoring arrangements are specified – by whom and how often.
  • Community Dementia Nurses should see the patient one month after initiation of any medication and will ensure that the patient is connected into any locally available post-diagnosis dementia support system.
  • Add to practice Dementia register
  • Adding the patient’s details to the Gloucestershire’s My Online Care Plan is a good idea to ensure that OOH services have access to key information.
  • Carer register and assessment
  • Managing Memory 2gether  i.e the Dementia Advisor or/and the Community Dementia Nurse will give the patient a leaflet/booklet on Dementia
  • Guidepost
Managing Behavioural Problems pathway

(Does not cover rapid tranquillisation of acutely disturbed)

                            

Delirium

  • After a delirium  resolves, an underlying dementia is often apparent.
  • Antipsychotic drugs may be used short-term for delirium  but note problems with antipsychotic drugs can cause in dementia (see below)
  • Keep number of doses to a minimum (eg 3 doses of haloperidol or risperidone in absence of a dementia history)

In the event of continuing problems, advice can be obtained from 2gether Mental Health Services. To access the referral form please follow this link the MH Referral form section of the site.

Guideline for treatment of Agitation in Alzheimer's Dementia

Please follow the resource link below to local dementia guidelines developed with 2gether Foundation Trust around managing agitation in dementia. This includes information on the following;

  • What are antipsychotics
  • How do antipsychotics work
  • Why are antipsychotics used in dementia
  • What are the common side-effects of antipsychotics
  • Risks
  • Memantine Shared Care Guideline
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