2.  Adults must be assumed to have the capacity to make decisions for themselves unless proved otherwise.  Individuals must be given all available support before it is concluded that they cannot make decisions for themselves.  Individuals must retain the right to make what might be seen as eccentric or unwise decisions.

3.  Anything done for or on behalf of individuals without capacity must be in their best interests.  Anything done for or on behalf of individuals without the capacity should restrict their rights and basic freedoms as little as possible. Community-based care  Support people with dementia in the community as far as possible.

4.  Always treat people with dementia and their carers with respect.  Ensure people with dementia are not excluded from services because of their diagnosis, age (whether regarded as too old or too young), or any disability.

5.  If there is a language barrier, offer: ◦ Written information in the preferred language and/or an accessible format ◦ Independent interpreters ◦ Psychological interventions in the preferred language  Ensure that people suspected of having dementia because of cognitive and functional deterioration, but who do not have sufficient memory impairment for diagnosis, are not denied access to support services.

6. Needs and preferences of people with dementia  Identify specific needs, including those arising from: ◦ Diversity (such as sex, ethnicity, age, religion and personal care) ◦ Ill health, physical and learning disabilities, sensory impairment, communication difficulties, problems with nutrition and poor oral health  Identify and wherever possible accommodate preferences (such as diet, sexuality and religion), particularly in residential care.  Record and address the needs and preferences in the care plan.

7. Younger people with dementia Specialist multidisciplinary services, allied to existing dementia services, should be developed for the assessment, diagnosis and care of younger people with dementia. People with learning disabilities Health and social care staff working with people with learning disabilities an other younger people at risk of dementia should be trained in dementia awareness. People with learning disabilities and those supporting them should have access to specialist advice and support for dementia

8.  Always seek valid consent from people with dementia ◦ Explain options and check that the person understands, has not been coerced and continues to consent over time ◦ Use the Mental Capacity Act 2005 if the person lacks capacity  Encourage the use of advocacy services and voluntary support. These services should be available to people with dementia and carers separately if required.

9.  Allow people with dementia to convey information in confidence. ◦ Discuss with the person any need to share information with colleagues or other agencies. ◦ Only disclose confidential material without consent in exceptional circumstances. ◦ As the dementia worsens, any decisions about sharing information should be made in the context of the Mental Capacity Act 2005.

10.  Discuss with the person with dementia, while he or she still has capacity, and his or her carer the use of: ◦ Advance statements (stating what is to be done if the person loses the capacity to communicate or make decisions) ◦ Advance decisions to refuse treatment ◦ Lasting Power of Attorney ◦ A preferred Place of Care Plan.

11. Impact of dementia on relationships  Assess the impact of dementia on personal (including sexual) relationships at the time of diagnosis and when indicated subsequently. Provide information about local support services if required. Because people with dementia are vulnerable to abuse and neglect, health and social care staff should have access to information and training about adult protection and abide by the local multi-agency policy.

12. Financial support and NHS Continuing Care  Explain to people of dementia and their carers: ◦ That the have the right to receive direct payments and individual budgets (where available); offer support to obtain and manage these if needed ◦ The statutory difference between NHS care and care provided by local authority social services to help them decide whether they are eligible for NHS continuing care.

13. Risk factors  Do not conduct general population screening.  In middle-aged and older people, review and treat risk factors such as smoking, excessive alcohol use, obesity, diabetes, hypertension and raised cholesterol levels.

14. Genetic counselling  Offer referral genetic counselling to those thought to have a genetic cause of dementia and to their unaffected relatives. ◦ Genetic counselling should be provided by regional genetic services. ◦ Do not use clinical genotyping if a genetic cause for dementia is not suspected, including late-onset dementia.

15. Prevention  Do not use the following as specific treatments for the primary prevention of dementia: ◦ Statins ◦ Vitamin E ◦ Hormone replacement therapy ◦ Non-steroidal anti-inflammatory drugs.  For the secondary prevention of dementia, review and treat vascular and other risk factors in people with the condition.

16.  In primary care, consider referring people with signs of mild cognitive impairment (MCI) for assessment at memory assessment services.  If undertaking health checks, including those conducted as part of health facilitation, be aware of: ◦ The increased risk of dementia in people with learning disabilities ◦ The possibility of dementia in other high-risk groups (for example people who have had a stroke or have a neurological condition such as Parkinson’s disease).

17. Memory assessment services that identify people with MCI (including those without memory impairment, which may be absent in the earlier stages of non-Alzheimer’s dementias) should offer follow-up to monitor signs of possible dementia.

18.  Make a diagnosis of dementia only after a comprehensive assessment, including: ◦ History taking ◦ Cognitive and mental state examination ◦ Physical examination ◦ Review of medication to identify any drugs that may impair cognitive functioning.  Ask people who are assessed for possible dementia whether they wish to know the diagnosis and with whom it should be shared.

19.  If dementia is mild or questionable, conduct forma neuropsychological testing.  At the time of diagnosis, and regularly afterwards, assess medical and psychiatric comorbidities, including depression and psychosis.

20. Clinical cognitive assessment  Examine: ◦ Attention and concentration ◦ Orientation ◦ Short and long term memory ◦ Praxis ◦ Language ◦ Executive function.

21.  Conduct formal cognitive testing using a standardised instrument, such as: ◦ Mini Mental State Examination (MMSE) ◦ 6-Item Cognitive Impairment test (6-CIT) ◦ General Practitioner assessment of Cognition (GPCOG) ◦ 7-Minute Screen  Take into account other factors that may affect performance, including educational level, skills, prior level of functioning and attainment, language, sensory impairment, psychiatric illness and physical or neurological problems.

22. Investigation of suspected dementia  Conduct a basic dementia screen at the time of presentation, usually in primary care. Include: ◦ Routine haematology ◦ Biochemistry (electrolytes, calcium, glucose, and renal and liver function) ◦ Thyroid function tests ◦ Serum vitamin B 12 and folate levels  Perform a midstream urine test if delirium is a possibility.

23.  Conduct investigations such as chest X-ray or electrocardiogram (ECG) as determined by clinical presentation.  Do not routinely: ◦ Test for syphilis serology or HIV unless there are risk factors or the clinical picture dictates ◦ Examine cerebrospinal fluid.

24.  Diagnosis of subtype of dementia should be made by healthcare professionals with expertise in differential diagnosis using international standardised criteria. TypeRecommended diagnostic criteria Alzheimer’s disease Prefer NINCDS/ADRDA criteria include ICD-10 and DSM-IV. Vascular dementiaPrefer NINDS-AIREN criteria. Alternatives include ICD-10 and DSM-IV. Dementia with Lewy Bodies (DLB) International Consensus criteria for DLB. Frontotemporal Dementia (FTD) Lund-Manchester criteria, NINDS criteria for FTD.

25.  Use cerebrospinal fluid examination if Creutzfeldt-Jakob disease (CJD) or other forms of rapidly progressive dementia are suspected.  Do not routinely use electroencephalogrpahy (EEG). Consider in: ◦ Suspected delirium, frontotemporal dementia or CJD ◦ Associated seizure disorder in those with dementia.  Consider brain biopsy only if a potentially reversible cause is suspected that cannot be diagnosed in any other way.

26. Imaging  Use structural imaging to exclude other cerebral pathologies and help establish the subtype. ◦ Prefer MRI to assist with early diagnosis and detect subcortical vascular changes. However, CT scanning could be used. ◦ Take specialist advice when interpreting scans in people with learning disabilities.  Use perfusion hexamethylpropyleneamine oxime (HMPAO) single- photon emission computed tomography (SPECT) to help differentiate Alzheimer’s disease, vascular dementia, and frontotemporal dementia. ◦ The test is not useful in people with Down’s syndrome, who may have SPECT abnormalities resembling Alzheimer’s disease throughout life. ◦ If HMPAO SPECT in unavailable, consider 2-[ 18 F]flouro-2-deoxy- D -glucose positron emission tomography (FDG PET) as an alternative.

27.  Use dopaminergic iodine-123-radiolabelled 2  - carbomethoxy-3  -(4-iodophenyl)-N-(3-fluoropropyl nortropane (FP-CIT) SPECT to confirm suspected DLB.  Usually manage dementia with mixed pathology according to the likely dominant condition.

28. Memory assessment services (provided by a memory assessment clinic or community mental health teams) should be the single point of referral for people with possible dementia. They should provide:  A responsive service with a full range of assessment, diagnostic, therapeutic and rehabilitation services to accommodate different types and all severities of dementia and the needs of families and carers.  Integrated care in partnership with local health, social care, and voluntary organisations.

29. Following a diagnosis of dementia:  Make time available to discuss the diagnosis with the person with dementia and, if the person consents, with their family. Both may need ongoing support.

30.  Offer the person with dementia and their family written information about: ◦ Signs and symptoms ◦ Course and prognosis ◦ Treatments ◦ Local care and support services ◦ Support groups ◦ Sources of financial and legal advice and advocacy ◦ Medico-legal issues, including driving ◦ Local information sources, including libraries and voluntary organisation. Record any advice and information given in the notes. Consider mentoring or supervising less experienced colleagues if you regularly diagnose dementia and discuss this with people with the condition and carers.