Identification and diagnosis of dementia

• Recommendation: Healthcare professionals should ensure that the discussion of a diagnosis of dementia should include positive and hopeful, yet realistic, messages; information on prognosis and sources of support; information on wellbeing and how the person with dementia can continue with their life, maintain their sense of self and accept their identity as someone with dementia.

Anticipatory care planning

• Recommendation: Anticipatory care planning may involve a series of conversations over time, to allow clarification, reflection and updates to the plan to reflect any changing needs. Early discussions are beneficial, as the capacity of the person with dementia diminishes as the disease progresses.
• Good practice point: Anticipatory Care Planning decisions should be reviewed and updated; the frequency of this will be influenced by the pace of disease progression and any changing needs.

Post diagnostic support

• Recommendation: Postdiagnostic support should incorporate continuity of care, including a ‘one-stop’ service or single point of contact, a single professional or case manager. This should be a healthcare or social care professional with appropriate skills, knowledge and expertise in dementia (see the Promoting Excellence Framework)¹¹, working with the GP, to ensure a tailored support package is delivered in a timely manner.

Grief and dementia

• Recommendation: Healthcare professionals should be aware that carers of people with dementia may experience pre-death grief from the point of diagnosis and throughout the stages of dementia, and sensitively enquire about these experiences: 
  • worsening pre-death grief as dementia becomes more severe
  • worsening pre-death grief at transition points, such as when the person with dementia is moved to long-term care.

Non-pharmacological approaches for distressed behaviours

• Recommendation: For managing distressed behaviour symptoms in people with dementia, tailored activities based on a comprehensive structured assessment may be considered. Activities should be individualised, focus on preserved capabilities and consider previous roles, interests and preferences.
• Recommendation: For carers of people with dementia, provision of tailored psychoeducation and skills training may be considered.
Components may include:

• • problem solving
  • identifying triggers
  • coping strategies for distressed behaviour
  • stress reduction
  • cognitive restructuring
  • communication skills
  • crisis management.

Changing needs of people with dementia

• Recommendation: Healthcare professionals should be aware that existing measures to define end of life in people with dementia based on cognition and ambulatory function may be ineffective and may not recognise the unmet needs at end of life.
Healthcare professionals should focus on the needs of the individual and consider moving away from a focus on defining end of life by disease stage.