Managing clients with dementia

Dementia is not a single illness. It is a general term for a group of conditions caused by damage to the brain, and it covers memory loss, difficulty following a conversation, and a gradual loss of skills a person once managed without help. It can affect people of any age, but it is most common in people over 65, and a diagnosis in someone younger is usually described separately as young-onset dementia.

Dementia is progressive, meaning it tends to get worse over months and years rather than staying still, though how fast and in what pattern depends on the type. Two types account for most of the clients you are likely to meet, and the next section sets them side by side. Rarer types, and the reasoning behind each one, are covered in the different types of dementia.

1. 1

   Notice what is different

   Same day

   A sudden drop in how well someone manages, new confusion, or a change in personality is worth flagging straightaway rather than waiting to see if it passes.
2. 2

   Tell whoever oversees the arrangement

   Same day

   The family or care manager should hear it directly from you, in plain terms, so a GP visit is not a surprise to anyone.
3. 3

   The GP checks for a simpler cause first

   Within days

   Confusion that comes on quickly is often something else altogether: a urinary tract infection, a new medication, dehydration, depression, or a hearing or sight problem that makes the world harder to read. These are common in older people and usually treatable.
4. 4

   A memory service completes a fuller assessment

   Within weeks

   If dementia still seems likely once other causes are ruled out, a specialist memory service carries out tests, and sometimes a brain scan, and confirms which type it is.

Once a diagnosis is confirmed, symptoms usually become clearer over time rather than staying ambiguous, and the seven stages of dementia sets out a more detailed model than the three broad stages used later on this page. If you already support someone diagnosed with dementia and want to know whether what you are seeing counts as progression, the signs that dementia is getting worse is worth reading alongside this one.

If a client's symptoms came on suddenly, ask whether they, or their family, know of a recent TIA or stroke: it changes what kind of decline to expect. The different types of dementia covers the rarer forms, including Lewy body and frontotemporal dementia, which behave differently again.

Alzheimer's disease is usually described in three broad stages, and it helps to know roughly where a client sits. In the early stage, a client may forget recent events, repeat themselves, or lose motivation for things they used to enjoy. In the middle stage, they may get lost in familiar places, experience hallucinations or misjudge their surroundings, or create risks through forgetfulness, such as leaving a cooker unattended. In the late stage, a client is more likely to need help eating and communicating, to lose mobility, and to become incontinent. The seven stages of dementia breaks this down further, and is worth reading once you know which broad stage a client is in.

Activities do not need to be elaborate to help. A shared photograph album or a favourite piece of music can hold someone's attention for longer than a new game, and how do you make someone with dementia happy has a fuller list. Some clients respond particularly well to animals, and a client who mentions missing a pet or a stable is worth listening to: small studies suggest that time spent with a horse, brushing its coat or simply sitting close by, can ease agitation in people with Alzheimer's, though the research so far is limited to a handful of small trials. Can horses help ease the symptoms of Alzheimer's? sets out what the research has looked at so far.

Touch can also reach someone when words no longer do, but it still needs consent. Can carers hug clients? covers how to read whether touch is welcome, which matters more, not less, once a client cannot always tell you clearly.

Some behaviour goes further than these five and puts the client or people around them at risk: hitting, biting, or a sudden change that puts someone in danger. If you ever feel at risk yourself, step back and leave the situation before anything else. Once everyone is safe, write down what happened while it is fresh and tell the family or whoever oversees the arrangement the same day, then ask them to raise it with the GP or a mental health team if it keeps happening.

Medication is sometimes used for very difficult behaviour, but NICE's guideline on dementia care is cautious about it: antipsychotics carry a higher risk of stroke in people with dementia and should only be considered once non-drug approaches have been tried and the risks discussed with the person's family. Decisions about starting, changing or stopping any medication belong to the prescriber, not to a carer. Your job is to notice and report side effects, not to make that call yourself.

Where a client cannot say clearly whether they agree to a task, such as being washed or taking a tablet, the Mental Capacity Act 2005 asks you to act in their best interests and to choose the least restrictive option, which in practice means treating resistance as an answer worth listening to rather than an obstacle to work around. Mental capacity: MCA and DoLS goes further into what a best interests decision involves. If you believe a client is at risk of abuse or neglect, from anyone, contact their local council's adult safeguarding team, findable through gov.uk, or the police on 999 if someone is in immediate danger.

None of these changes need to happen at once, and most are the family's decision rather than yours to make alone. Your role is usually to notice what would help and say so. Keeping safe at home, from Alzheimer's Society, has a fuller list, and a risk assessment is the right place to record anything you notice, so the family and the next carer both see it.

As a client's needs grow, more than one carer's attention is sometimes needed. If you notice something a professional would handle better, it is worth naming who, and saying so to the family or care manager rather than leaving it unspoken: