Dementia Care Planning

After a diagnosis of dementia, early planning is crucial. While the person still has capacity — even if they have mild symptoms — there are several important steps to take:

• Lasting Power of Attorney (LPA) — The most urgent legal step. Both a Property and Financial Affairs LPA and a Health and Welfare LPA should be made. Capacity to make an LPA may be present even after a dementia diagnosis, but it should not be delayed — capacity can deteriorate unexpectedly;
• Advance Decision to Refuse Treatment (ADRT) — If the person has wishes about specific medical treatments they would refuse in advanced dementia (such as artificial nutrition or CPR), an ADRT documents this;
• Advance statement — A non-binding but important document recording the person's values, preferences, and wishes about future care;
• Will review — Ensure the will is up to date and reflects current wishes.

Many people with dementia live at home, supported by family carers and professional care workers. To support someone with dementia at home effectively:

• Care needs assessment — Request a care needs assessment from the council to identify eligible needs and access funded support;
• Carer's assessment — The family carer is entitled to their own carer's assessment and may access respite care and other support;
• Dementia adviser or Admiral Nurse — Ask the GP for a referral to a dementia adviser (provided through Alzheimer's Society in many areas) or an Admiral Nurse (specialist dementia nursing support for families). These professionals provide practical and emotional guidance;
• Home adaptations — Occupational therapists can assess the home for safety and recommend adaptations (grab rails, stair gates, door alarms) to reduce risk;
• Medication management — Dossette boxes, blister packs, or automated pill dispensers help manage medications safely.

As dementia progresses, a move to a care home or nursing home may become necessary. Planning for this possibility — rather than waiting for a crisis — leads to better outcomes:

• Research care homes early — Visit homes before a crisis is imminent, when there is time to make a considered choice. Look for homes with dementia-specific provision (dementia registered homes have staff trained in dementia care);
• Involve the person in discussions about care home preferences while they have capacity to express a view — their preferences should be documented;
• Financial planning — Understand the care home fee structure and how long funds will last at current rates. Consider whether NHS Continuing Healthcare applies. Seek specialist financial advice;
• Legal readiness — Ensure the LPA is registered and the attorney is ready to act. The attorney will need to manage the finances and make decisions about the care home placement if the person lacks capacity by then.

Advance care planning should happen as early as possible after a dementia diagnosis, while the person still has mental capacity. Key documents to consider include a Lasting Power of Attorney (both types), an advance decision to refuse treatment (ADRT), and an advance statement of wishes and preferences. These documents give the person a voice in their future care even when they can no longer communicate their wishes.

Mental capacity is decision-specific and time-specific — someone with dementia may have capacity for some decisions but not others, and capacity can fluctuate. Under the Mental Capacity Act 2005, a person must be assumed to have capacity unless it is established otherwise. If capacity is in question for a specific decision, a formal capacity assessment by a healthcare professional may be needed. All decisions made on behalf of someone who lacks capacity must be in their best interests.