In response to concerns over provision of care for people with dementia, NICE and the Social Care Institute for Excellence (SCIE) developed a national guideline on supporting patients and carers. The clinical and support issues raised below are based on the NICE/SCIE (2006a) guidance on dementia.
The guidance specifies nurses are key professionals in dementia care. Whether they work in mental health or elsewhere all nurses need to understand the guidance to enable sound implementation across all care settings.
Bethany Shackleton, MSc, BA, is guideline implementation adviser, National Collaborating Centre for Mental Health;Karen Harrison, MA, RMN, RNMH, RGN, is consultant admiral nurse, Barnet,Enfieldand Haringey Mental Health NHS Trust;Clare Taylor, DPhil, MPhil, BA, is editor, National Collaborating Centre for Mental Health.
Shackleton, B. et al(2008) Dementia 2: early diagnosis and initial nursing care. Nursing Times; 104: 7, 26–27.
- Understand the importance of early recognition and diagnosis of dementia.
- Consider each person’s individual background and how this will influence assessment.
Principles of care
Individual needs and preferences
Overarching the recommended procedures for early intervention, diagnosis and treatment are fundamental principles on how all health and social care staff should approach caring for people with dementia. These provide the foundation for evidence-based treatment and effective support, and enable patients to benefit from care and improve their quality of life.
The guidance is underpinned by the person-centred approach and health and social care professionals must appreciate the importance of the individual’s needs and preferences. Factors to consider when planning care and support include:
- Diversity (sex, ethnicity, age, religion, personal care);
- Physical and learning disabilities;
- Sensory impairment;
- Communication difficulties;
- Problems with nutrition and oral health.
one of these personal circumstances should preclude people from entering services, receiving the same level of respect or accessing the same level of information on dementia and the services available to them.
The NICE/SCIE guidance contains some case study examples, which help to illustrate the importance of considering the needs and preferences of individual patients. One of these examples is of an elderly non-English speaking patient. ‘Mrs H is 79 years old, with a diagnosis of multi-infarct dementia. She moved to this country fromBangladeshwith her husband and has never learnt to speak English. She was widowed two years ago’ (NICE and SCIE, 2006a).
There were many challenges in Mrs H’s care as this next extract from the example demonstrates: ‘…communication difficulties…sense of independence…fears… the stigma of the condition within her culture…’
In order to help Mrs H’s personal circumstances she could be given written material explaining the assessment process, diagnosis and dementia care in her own language. Retaining confidentiality and respecting the cultural difficulties of accepting the diagnosis will be crucial.
Consent and capacity
People with dementia should have the opportunity to make a fully informed decision about their assessment, diagnosis and future care. If nurses believe they do not have the capacity to make such decisions they should refer to the Mental Capacity Act 2005 (see box below).
The Mental Capacity Act 2005
The act has five key principles:
The person’s consent regarding any treatment or care options should always be sought. Advocacy services and voluntary support may be required. As early as possible it is helpful to discuss the use of advance statements (directing what to do if the person loses capacity to communicate or make decisions); advance decisions to refuse treatment; lasting power of attorney (see the Mental Capacity Act 2005); and a preferred place of care (see www.cancerlancashire.org.uk/ppc.html).
A number of interventions can improve patients’ and carers’ quality of life so it is important to identify anyone who may have dementia as quickly as possible so they can be offered relevant care.
Nurses are well placed to identify people with suspected dementia. All primary healthcare professionals should be sensitive to signs of minor cognitive impairment (MCI) and, if suspected, should refer the person to a memory assessment service (a nurse may conduct the assessment). Practitioners should look for early warning signs during routine health checks or any other contact with patients. Some groups are particularly vulnerable to dementia and should be monitored more closely. These include:
- People with learning disabilities;
- People with Down’s syndrome;
- People who have had a stroke;
- People with a neurological disorder such as Parkinson’s disease.
The social stigma and potential consequences of a dementia diagnosis can cause families and friends to ignore or hide signs of the condition. Often they are unaware of what to look out for, or symptoms can become confused with the person’s pre-existing character or behavioural traits.
A person suspected of having dementia may not (initially or ever) wish to disclose this to her or his family and friends. It is important to maintain confidentiality over the suspected or confirmed/not confirmed diagnosis at all times and in all situations.
Memory assessment and diagnostic services
The guidance recommends that memory assessment services should be the single point of referral for people with suspected dementia. These could exist within a memory assessment clinic or a community mental health team. They should include a full range of assessment, diagnostic, therapeutic and rehabilitative services.
It is important to explain to the person with suspected dementia and their carers what to expect at the memory assessment service and to ensure they understand.
It is useful to give them written information on dementia and dementia care services at this point. This is available from voluntary organisations, while many NHS trusts now provide materials in various languages. A version of the NICE/SCIE guidance specifically aimed at people with dementia and their carers has been published. A booklet on understanding the guidance (NICE and SCIE, 2006b) is available at www.nice.org.uk.
The National Collaborating Centre for Mental Health (NCCMH) is developing a fact sheet for people with dementia and one for carers that highlight key facts from the guidance and signpost where to find help and support. These will be available at www.nccmh.org.uk.
Clinical cognitive assessment
It is common for assessments to be undertaken by nurses within this setting. It will examine the person’s:
- Attention and concentration;
- Short- and long-term memory;
- Executive function.
These areas will be tested with a standardised instrument. There are four well recognised tests:
- MMSE (mini mental state examination): this 30-item test takes around five minutes to complete and is the most commonly used test. It includes a series of simple tests such as counting back from 100 in sevens;
- 6-CIT (six-item cognitive impairment test): a brief test including tasks such as reciting the months of the year backwards;
- GPCOG (general practitioner assessment of cognition): this includes a brief informant rating as well as cognitive items;
- 7-minute screen: this includes four batteries of tests such as the visuospatial clock drawing test.
Sometimes the score may not reflect a person’s true ability so other factors must be accounted for that may affect performance in the tests, such as: educational levels; skills; previous level of functioning and attainment; language; sensory impairment; psychiatric illness and physical/neurological problems.
Alongside this cognitive assessment, patients should have a physical examination and full history taken. Further diagnostic tests for suspected dementia include:
- Haematology testing;
- Biochemistry tests;
- Thyroid function tests;
- Serum vitamin B12 and folate levels;
- Urine test;
- Chest X-rays or ECG (determined by clinical presentation).
If a dementia diagnosis is confirmed there may be more tests to help diagnose the subtype. These include:
- Cerebrospinal fluid examination if CJD is suspected;
- Brain scan (usually MRI, otherwise a CT).
Early identification and initial care is just one area in dementia care where nurses are invaluable. This includes: recognising early signs of dementia; facilitating prompt referral; offering detailed explanations of dementia and the interventions; and, above all, treating patients and family members with sensitivity and respect during these early stages.
These factors will not only enable patients to enter care systems earlier (and receive helpful interventions sooner) but also their acceptance of dementia and their perspective could be positively influenced through a person-centred approach.
Mental Capacity Act2005 www.opsi.gov.uk
NICE, SCIE(2006a) Dementia: Supporting People with Dementia and Their Carers in Health and Social Care.London: NICE.www.nice.org.uk
NICE, SCIE(2006b) Understanding NICE-SCIE Guidance – Information for People who Use NHS and Social Care Services.London: NICE.