The eight decisions every Alzheimer's caregiver eventually faces

Before the list, one principle that applies to every item on it. The person with the diagnosis is a participant in these decisions for far longer than most families expect. In the early stage they can state preferences, sign documents and veto plans. In the middle stage they can still express what they like and dislike, even when they cannot weigh options. The earlier a decision is raised, the more of it is theirs.

1. Who to tell, and when

The first decision usually arrives before anyone has named it as one: whether to tell the wider family, the employer, the neighbours, the grandchildren. Secrecy feels protective. In practice it isolates the person and the caregiver at exactly the moment they need other people, and it makes every later decision harder, because nobody else has been watching the decline.

The useful question is not whether to tell but how. People deserve to hear it from the person or the spouse, in a form that gives them something to do: a visit to make, a task to take on, a day of the week to cover. Our diagnosis page has a checklist for the weeks after the news.

2. Driving

Driving is the first decision that pits safety against independence, and it is the one families most often delay. Early-stage Alzheimer's does not by itself mean a licence should go. It does mean the question cannot be left to the person alone, because the disease takes insight before it takes skill.

What works is agreeing the test in advance. A formal driving assessment, a rule that two near-misses means a stop, a doctor's instruction that can be blamed rather than a spouse's. Then a plan for how the person will get around, because a car taken away with nothing in its place becomes a daily grievance. The evidence on driving ability and on what cessation does to people is on our driving page.

3. Money and legal authority

This is the decision with a deadline. Power of attorney for finances and for health, an advance directive, and a will all require legal capacity, and capacity is present in the early stage and uncertain in the middle one. Families who wait end up in court seeking guardianship, which is slower, more expensive and removes far more of the person's say than a document they signed themselves.

The second half of this decision is the money itself. Who will pay for what is coming, what the person owns, where the documents are, and whether Medicaid planning is needed. Our power of attorney page covers what to sign and what the research says about who plans ahead; the planning page covers the costs and who pays.

4. Living alone

Many people with early Alzheimer's live alone, and many manage for years with scaffolding: a pill organiser, a calendar, a neighbour who checks in, automatic bill payments, a stove shut-off. The decision is when the scaffolding stops being enough. The usual triggers are a wandering episode, a fall, a kitchen fire, weight loss, unpaid bills, or a scam.

The honest approach is to name the triggers in advance, with the person, so that when one happens it is the agreed signal and not a betrayal. Our safety page lists what to put in place now and what to have ready before someone goes missing.

5. Accepting help

Caregivers refuse help for understandable reasons: the person does not want strangers, nobody else does it right, it costs money, it feels like failure. The research is unusually consistent that this refusal is the decision that does the most harm to the caregiver.

A three-year study of 720 patients from nine Australian memory clinics, in the International Journal of Geriatric Psychiatry, found that 47.4% of caregivers had clinically significant burden at the start, rising to 56.8% at three years. The burden rose over time for caregivers of patients receiving no services. For those whose patients were receiving services or residential care, after adjusting for other factors, it did not. Greater behavioural symptoms, lower function and the patient no longer driving were each associated with heavier burden.

A 2014 clinical review in JAMA lists the risk factors for caregiver burden: being female, lower education, living with the person, more hours of care, depression, social isolation, financial stress, and not having chosen the role. Several of those are things that help can change. Our respite page asks the blunt question of whether respite works and gives the blunt answer the studies support; the caregiver health page has the rest.

6. Hospital

At some point the person will have a fall, an infection or a chest pain, and someone will have to decide whether to call an ambulance. Hospital is sometimes necessary and always risky for someone with dementia: a strange environment, broken sleep, new medicines and infection are the recipe for delirium, a sudden worsening of confusion that can leave the person permanently less able than before.

The decision is easier with two things done in advance. First, a conversation with the doctor about which problems should go to hospital and which can be managed at home or in the care setting. Second, a one-page summary that travels with the person: diagnosis, medicines, what calms them, who to call. Our hospital stays and delirium page has the numbers on how common delirium is and what prevents it.

7. Moving into care

For most families this is the hardest decision on the list, and the one made latest, often from a hospital bed after a crisis. The guilt is real and it is also misplaced: the meta-analysis below found no average effect of caregiver interventions on the risk of a move into care, which is another way of saying that the move is driven by the disease, not by the caregiver's effort.

What can be chosen is the timing and the place. Visiting settings before they are needed, knowing what they cost and what Medicaid will cover, and asking the person early what they would want, all turn a crisis into a decision. The nursing home cost page has the published medians, and care settings by state shows what is available where you live.

8. Feeding, treatment and the end

In the late stage the decisions become medical and they come in a cluster: a feeding tube when swallowing fails, antibiotics for a pneumonia, admission for an infection, resuscitation. There are no universally right answers. What helps is the advance directive from decision three, the person's own words written down while they could say them, and a palliative care team willing to walk through the real trade-offs of each option. Hospice can be involved long before the final weeks, and families very often say afterwards that they wish they had asked sooner. Our stages page covers the late stage and end of life in more detail.

What the research says about you

Two large reviews in the library are worth knowing about, because they say something about what help is worth seeking.

An updated meta-analysis in The Gerontologist pooled 282 controlled studies of interventions for dementia caregivers. On average, interventions had a significant, small-to-moderate effect on caregivers' knowledge and skills, well-being, burden, depression and anxiety, and on the symptoms of the person they cared for. Psychoeducation and multicomponent programmes affected the most outcomes. No average effect was found on the risk of the person moving into institutional care.

The REACH II trial, reported in the Journal of the American Geriatrics Society, is an example of what "multicomponent" means. 495 caregiver-patient pairs in five US cities, roughly a third each Hispanic, white and African American, were randomised to a six-month programme of nine home visits and three telephone sessions built around an individual risk profile, or to two check-in calls. Caregivers in the programme reported better self-rated health, sleep, physical health and emotional health afterwards, and less burden and bother with the caregiving role, with changes in depression appearing to mediate the gains.

The effects are modest and the reviews say so. But the pattern is consistent: structured help, started before the crisis, changes how caregivers fare, even when it does not change the course of the disease. The decisions above are easier to make from that position than from exhaustion.