Advance and anticipatory, or future, care planning

Offer early and ongoing opportunities for people living with dementia and people involved in their care to discuss: the benefits of planning ahead, lasting power of attorney (for health and welfare decisions and property and financial affairs decisions), an advance statement about their wishes, preferences, beliefs and values regarding their future care, advance decisions to refuse treatment, their preferences for place of care and place of death. Explain that they will be given chances to review and change any advance statements and decisions they have made.

At each care review, offer people the chance to review and change any advance statements and decisions they have made.

Anticipatory care planning discussions should:

• be tailored to the needs, readiness to engage and capacity of the person with dementia
• consider the needs of family and carers
• consider triggers for discussions, such as diagnosis, change or decline in health status or change in place of residence.

Healthcare professionals should ensure that the person with dementia, and their family or carer(s), are aware of the progressive nature of dementia and what to expect at different stages of the illness.

Healthcare professionals should be aware that receptivity to anticipatory care planning discussions are increased when the person with dementia and their family have insight into the progressive and terminal nature of dementia.

The person with dementia, their family and carers and healthcare professionals should all have the opportunity to initiate, and be involved in, anticipatory care planning discussions.

If the person with dementia does not initiate anticipatory planning discussions, healthcare professionals should proactively initiate or enable person-centred anticipatory care planning conversations as soon as possible.

The person with dementia, their family and carers and healthcare professionals who are involved in anticipatory care planning discussions should all seek to build trusting relationships.

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.

Anticipatory care planning can take place in any care setting, including the family home, primary care, hospital or care home.

Healthcare professionals should receive education and training on communication skills, anticipatory care planning, the dementia disease trajectory, treatment and care options, and palliative care.

Practitioners who support anticipatory care planning for people with dementia should be knowledgeable about dementia and dementia care.

All healthcare professionals leading on dementia-related anticipatory care planning should be at the enhanced or expert level of practice or above in dementia care as defined by the Promoting Excellence Framework in Dementia.¹¹

Healthcare professionals with appropriate expertise should lead anticipatory care planning discussions that involve complex clinical needs and treatment considerations, such as artificial feeding.

Healthcare professionals should be aware of anticipatory care planning education and toolkits that are available.

Managers, clinical and professional leads should prioritise and support healthcare professionals to complete anticipatory care plans with people with dementia and to engage with available training.

Healthcare professionals should consider whether or not the person already has an anticipatory care plan; if so, their anticipatory care plan should be discussed and updated to consider their dementia diagnosis.

Healthcare professionals and others involved in anticipatory care discussions should allow sufficient time, and ensure a quiet location, free from distractions, that facilitates a supportive discussion and safeguards confidentiality.

It is important that the most up to date anticipatory care plan is shared with the people who are looking after the person with dementia. This should be easily accessible whenever health or care decisions are being made.

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.

The person with dementia, and their family or carer(s), should have the progressive and terminal nature of the condition explained to them.

Discuss the importance of the person with dementia and their carers participating in anticipatory care planning discussions.

Explain to the person with dementia and their carers what anticipatory care planning is, why it is important and the benefits of an anticipatory care plan.