Alzheimer's Disease Care Staff Guide: Symptoms, Medicines and Support

Alzheimer's disease is the most common cause of dementia in the UK. It is a progressive condition, which means symptoms change and usually become more noticeable over time. For care staff, understanding how Alzheimer's typically develops helps you recognise changes early, adapt the way you support each person, and speak with confidence to families and clinicians.

This guide summarises what the NHS and NICE say about Alzheimer's disease and turns it into practical points for day-to-day care. It does not replace the advice of the person's GP, memory service or specialist team.

What Alzheimer's disease is

The NHS explains that dementia is a group of symptoms caused by an ongoing decline in brain function, affecting memory, thinking and other mental abilities. Alzheimer's disease is the most common cause. The NHS says it is most common in people over 65, affecting about 1 in 14 people over 65 and about 1 in 6 people over 80. Around 1 in 13 people with Alzheimer's are under 65, which is known as young-onset dementia. Our guide to young-onset dementia covers the particular needs of younger people.

Risk factors listed by the NHS include increasing age, a family history of the condition, untreated depression and lifestyle factors and conditions linked to cardiovascular disease. Alzheimer's often overlaps with other conditions, and our guide to vascular dementia explains one of the most common companions.

Early symptoms

According to the NHS, the first signs are usually minor memory problems, such as forgetting recent conversations or events, or forgetting the names of places and objects. These changes can be easy to put down to ageing, but the NHS is clear that dementia is not a natural part of ageing. Anyone worried about their memory should see a GP. It helps if someone who knows the person well goes with them to describe the changes they have noticed.

How symptoms change over time

As Alzheimer's progresses, the NHS notes that memory problems get worse and other symptoms may appear:

• confusion, disorientation and getting lost in familiar places
• difficulty planning or making decisions
• problems with speech and language
• difficulty moving around without help or carrying out self-care tasks
• behaviour changes, such as aggression or suspicion of others
• hallucinations and delusions
• low mood or anxiety

Not everyone experiences all of these, and the pace of change varies from person to person. Good records of what you see, when it happens and what seems to help give clinicians valuable information about how a person is changing.

Person-centred support

NICE guideline NG97 on dementia places person-centred care at the centre of support. It says people should be encouraged and enabled to give their own views and opinions about their care, and that staff should understand the person as an individual and know their life story. In practice, that means finding out what matters to each resident: their routines, relationships, work history, music, faith and the way they like to be addressed. Our guide to life story work shows how to gather and use this information.

Simple approaches help many people. Speak calmly, use short sentences, give one instruction at a time, and allow plenty of time for a response. Keep routines consistent, reduce background noise and make sure people can see and hear properly by checking glasses and hearing aids.

Responding to distress

When a person becomes agitated or distressed, it is tempting to focus on the behaviour itself. NICE advises checking first for causes such as pain, delirium or care that does not meet the person's needs, and offering psychosocial and environmental approaches to reduce distress before considering medicines. Personalised activities that promote engagement, pleasure and interest are recommended for agitation or aggression. If a person is unwell or newly confused, tell a senior colleague straight away, because delirium needs prompt assessment.

Eating, swallowing and chest infections

The NHS notes that swallowing problems can develop in Alzheimer's, which may lead to chest infections, and that eating and appetite often decline over time. Staff should report coughing at meals, a wet-sounding voice, food pocketed in the cheeks, or weight loss. Follow any swallowing recommendations from a speech and language therapist exactly.

Medicines

There is no cure for Alzheimer's, but some medicines can help with symptoms for some people. The NHS names donepezil, galantamine and rivastigmine for early- to mid-stage Alzheimer's, and memantine for moderate or severe disease. These are prescribed by specialists, or by GPs on a specialist's advice. Care staff should give medicines exactly as prescribed, watch for side effects such as nausea, vomiting and loss of appetite, and tell the prescriber how the person is responding.

Outlook and palliative care

The NHS says people can live for several years after symptoms start, though this varies widely. Alzheimer's is a life-limiting illness, and many people die from another cause. NICE recommends offering flexible, needs-based palliative care from diagnosis, and anticipatory planning as the end of life approaches, involving the person and their family as far as possible. Respect advance care plans and decisions made by or on behalf of the person.

Supporting families and carers

NICE advises that carers have a right to a carer assessment, including for respite care, and that support should be available from diagnosis. It also notes that carers are at increased risk of depression. Treat families as partners, listen to what they know about the person and signpost them to local support.

Training and professional development

NICE says care providers should give all staff training in person-centred and outcome-focused care for people living with dementia, with additional face-to-face training and mentoring for staff who deliver care and support. Keeping a record of what you have learned and how you have applied it supports your professional development and shows commitment to good practice. Reflect on real situations with your supervisor, and explore our CPD resources for care staff to build your knowledge.

Frequently asked questions

Is Alzheimer's the same as dementia?

No. Dementia is the umbrella term for a group of symptoms. Alzheimer's disease is the most common cause of dementia.

Can Alzheimer's be diagnosed with a single test?

No. The NHS says there is no single diagnostic test, and memory problems do not necessarily mean Alzheimer's.

Should staff stop medicines if a person seems more advanced?

No. NICE says AChE inhibitors should not be stopped in Alzheimer's disease because of disease severity alone. Any change is for the prescriber to decide.

This article draws on the NHS Alzheimer's disease pages (reviewed July 2024) and NICE guideline NG97.