Best-Interests Decisions in Dementia Services: Evidence, Least Restriction and Human Rights in Practice
Best-interests decisions are where dementia services either build trust or create avoidable safeguarding risk. Families, commissioners, and inspectors do not just want to know what decision was made; they want to see how it was reached, whether it was the least restrictive option, and whether outcomes were reviewed. This article connects safeguarding, capacity, consent and human rights to how different dementia service models make decisions day to day, so restrictions do not become routine and unlawful.
What triggers best-interests decisions in dementia care
Most best-interests decisions emerge from predictable pressure points:
- refusal of essential care (skin integrity, continence support, nutrition, medicines)
- choices that increase risk (leaving the service, unsafe cooking, giving money away)
- conflicts between family views and the person’s wishes
- restrictions introduced “for safety” that become normalised (locked doors, constant observation, contact bans)
The operational goal is not to remove risk. It is to make decisions lawful, proportionate, and reviewable, with clear evidence that the person’s rights remain central.
A defensible best-interests pathway: the practical steps
Best interests is not a single meeting and a signature. In strong services it is a pathway with clear checkpoints:
- Define the decision and confirm the person lacks capacity for that specific decision (with evidence of support offered to maximise capacity).
- Gather the person’s perspective using life story information, known preferences, and current communication cues.
- Consult relevant people (family, advocate, key professionals) with clarity on what they are being asked to contribute.
- Identify options including less restrictive alternatives and “trial plans”, not just a binary yes/no outcome.
- Decide, document, review with explicit review dates and triggers for escalation.
Operational Example 1: Restricting access to alcohol and money (capacity fluctuates)
Context: A person with mixed dementia buys alcohol daily and has started giving cash to strangers. Family demands staff stop them leaving and take control of all money. The person becomes angry when challenged and refuses support.
Support approach: The service separates decisions: capacity for “spending small amounts” may differ from capacity for “withdrawing large sums” or “understanding exploitation risk”. Staff maximise choice by offering supported shopping, setting spending limits through agreed methods, and providing alternatives (social activities at the times they usually go out).
Day-to-day delivery detail: Staff implement a staged plan: (1) accompanied cash withdrawal with the person choosing an agreed amount; (2) a simple spending plan with visual prompts; (3) community safety steps such as staff check-ins and safer routes. If exploitation risk persists and capacity is lacking for high-risk decisions, a best-interests meeting considers proportionate controls (e.g., limiting access to bank cards), with escalation routes documented where relevant.
How effectiveness or change is evidenced: The service tracks incidents of financial loss, distress levels, and participation in alternative routines. Reviews consider whether restrictions can be reduced as behaviour stabilises, demonstrating least restrictive practice over time.
Operational Example 2: Contact restrictions where safeguarding concerns exist
Context: A relative frequently visits, causes distress, pressures the person to sign documents, and becomes aggressive with staff. The person sometimes asks to see them and sometimes asks them to leave. Staff consider a “ban”.
Support approach: The service treats this as both safeguarding and human rights: contact is part of private and family life, but must be safe. They explore structured contact rather than blanket prohibition: supervised visits, limited duration, agreed behaviour expectations, and alternative contact methods (phone/video) if face-to-face triggers distress.
Day-to-day delivery detail: Staff document each visit using objective language: what was said, how the person responded, how distress presented, and what de-escalation was required. The manager convenes a best-interests meeting if capacity to decide on contact is lacking, with safeguarding advice where coercion is suspected. Any restriction is time-limited, proportionate, and includes an appeal/review process.
How effectiveness or change is evidenced: Evidence includes reduced distress incidents, improved emotional wellbeing markers (sleep, appetite, engagement), and a documented review schedule to reduce restriction when safe.
Operational Example 3: Nutrition, hydration and “refusal” at end-stage dementia
Context: A person with advanced dementia pockets food and refuses fluids, leading to recurrent UTIs and weight loss. Family insists staff “make them eat” and requests thickened fluids without assessment.
Support approach: The service applies a multidisciplinary approach: SALT assessment, dietitian guidance, GP review for reversible causes (pain, oral thrush, constipation), and a comfort-focused plan where appropriate. The person’s past wishes and current cues are central.
Day-to-day delivery detail: Staff trial small, frequent, preferred foods at calm times; use hand-over-hand prompting; adapt texture per SALT; and monitor fatigue. Where capacity is lacking for eating/drinking decisions, best interests focuses on comfort, dignity, and least restrictive support rather than forced feeding. Escalation pathways are clear (clinical review, family meeting, anticipatory care planning).
How effectiveness or change is evidenced: The service monitors weight trends, hydration indicators, infection rates, and observed comfort. Reviews evidence whether interventions improve wellbeing, and document rationale if the plan shifts toward comfort and palliative goals.
Commissioner expectation: proportionality, review and demonstrable outcomes
Commissioner expectation: Commissioners expect restrictions and best-interests decisions to be time-limited and reviewed, with evidence of outcomes. They will look for structured decision records, a clear audit trail of alternatives trialled, and the ability to show that restrictions reduce as risk reduces. In practice, this means you can evidence review dates, outcome measures (incidents, distress, engagement, health indicators), and governance oversight (risk panels, quality audits, multidisciplinary involvement).
Regulator / Inspector expectation: least restrictive practice is visible in daily routines
Regulator / Inspector expectation (e.g. CQC): Inspectors commonly test whether “least restrictive” is real or rhetorical. They will ask staff how they supported choice, what alternatives were tried, and how the person’s rights were considered when under pressure. They will look for blanket rules, routine restrictions, or poor recording that suggests coercion. Strong services can demonstrate personalised plans, staff confidence in rights-based practice, and routine review mechanisms that actively reduce restrictions.
Governance: how services stop “restriction creep”
Restriction creep happens when a short-term control becomes routine because it feels safer. Preventing this requires governance that forces review:
- Restriction register: a live log of restrictions (supervision levels, locked doors, contact limits) with start dates, rationale, and review dates.
- Monthly human-rights review: a structured check that restrictions are necessary, proportionate, and the least restrictive option.
- Quality sampling: file audits that test evidence of alternatives, consultation, and outcomes.
- Learning loops: incident reviews that ask “what would reduce restriction next time?” not only “how do we stop it happening?”
What “good” looks like when challenged
When challenged by a commissioner, safeguarding partner, or inspector, a robust service can quickly show: the decision, the capacity assessment, who was consulted, the options considered, the least restrictive rationale, and the review cycle with outcomes. This is how best-interests decision-making becomes a protective factor rather than a risk.