NICE NG97 recommends that families come to care reviews with questions about advance statements, current care goals, and what support the family itself needs to sustain caregiving. The guidance treats reviews as moments to check whether the person with dementia's documented wishes still hold true, whether the current care plan remains aligned with their priorities, and whether the family's own needs are being addressed.
The guidance requires practitioners to involve the person and their family/carers "as far as possible" in care planning discussions, not as passive observers but as active contributors to decisions. Rather than a one-off conversation, NICE NG97 frames reviews as regular check-ins where preferences may shift with disease progression and new circumstances. Families who prepare with specific questions can ensure their relative's voice remains heard and their own needs are not overlooked.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Table of Contents
- Questions About Advance Statements and Wishes
- Questions About Current Care Goals and How the Plan Is Working
- Questions About Family Support and Carer Needs
- Bring Specific Examples and Documentation
- Frequently Asked Questions
Questions About Advance Statements and Wishes
NICE NG97 recommends offering all people living with dementia opportunities to discuss and document advance statements—their wishes, preferences, beliefs and values about future care—and reviewing these at each subsequent care review. Before the review, families should ask: "Has my relative's advance statement been reviewed, and does it still reflect what they want?" An advance statement captures values, preferences, and specific wishes (preference to stay at home, concerns about medical interventions, or who should be involved in decisions) made when the person could communicate clearly.
If the person with dementia can still express wishes, discuss these directly. If capacity is limited, ask whether documented statements made earlier are guiding current decisions. Specific questions include:.
- Does the advance statement still reflect my relative's values and preferences?
- Have circumstances changed enough that we need to update it?
- If my relative can no longer communicate, how is their previous statement being used in decisions?
Questions About Current Care Goals and How the Plan Is Working
The guideline requires documenting and regularly revisiting the person's goals, priorities, and preferences for care—not a fixed list but a tailored discussion reflecting individual circumstances and stage of dementia. ask the care team: "What are the current goals for my relative's care, and is the plan actually addressing what matters most to them?" Practical questions include: Families often notice problems before services do—changes in mood, eating, medication side effects, or unmet social needs. Bringing these observations to the review ensures they shape the next steps and shows how the care plan is landing in daily life.
- Is the current care plan working toward my relative's own goals, or is it just managing symptoms?
- How has my relative's condition or needs changed since the last review?
- Are there areas where they're struggling that we haven't yet addressed?
- If the plan isn't working, what are we changing at this review?
Questions About Family Support and Carer Needs
Family carers should be told about training and support meeting their own needs and preferences, addressing carer burden and depression risk. The review should address not just the person with dementia but the family doing the caring. Ask: "What support or training is available to help me as a carer, and what would actually help my situation right now?" Questions for the care team: Carer burnout is common and documented; the review is the moment to name unmet needs and secure practical help rather than struggling alone until crisis hits.
- What training or education is available to help me understand my relative's condition and manage difficult behaviours?
- Are there respite services, support groups, or counselling available to me?
- How can I access emergency support if my relative's needs spike suddenly?
- What happens if my own health or capacity to care changes?
Bring Specific Examples and Documentation
Family members are often the best source of detailed information about functional changes—how your relative manages medications, cooking, money, navigation, or familiar tasks. Write down specific examples before the review: "My relative has stopped managing their medications and I'm now handling them" or "They're sleeping more during the day and showing less interest in activities they used to enjoy." Concrete observations are more useful to the care team than general descriptions. If an advance statement exists, re-read it together beforehand and note any shifts in your relative's condition or preferences.
Bring a written list of questions so you do not forget key points during the meeting. Ask for copies of the updated care plan and any revised advance statements in writing. If you disagree with any aspect of the plan or have concerns, raise them during the review—that conversation belongs there, not afterwards. Request a summary letter if one is not offered automatically.
Frequently Asked Questions
What if my relative no longer has the capacity to discuss their preferences at the review?
NICE NG97 requires practitioners to use best-interest decision-making, which relies on documented advance statements made when capacity existed, input from people who know the person well (like family), and assessment of what would benefit them. This is why reviewing advance statements regularly—before capacity is lost—matters so much.
Do we have to follow the advance statement if circumstances have changed dramatically?
Advance statements are guides, not rigid rules. The person's current wellbeing, changed circumstances, and any sign of changed preferences must also be considered. The care review is the time to discuss whether the old statement still fits or needs updating.
What if the care team and family disagree about what is best for my relative?
Disagreements should be raised during the review. Ask about the reasoning behind their recommendations and explain your concerns clearly. If disagreement persists, ask about formal safeguarding or dispute processes. NICE NG97 emphasises involving families "as far as possible," but serious disagreements may need mediation beyond the review itself.
