Frontotemporal Dementia: A Care Staff Guide to Behaviour and Language Changes

Frontotemporal dementia is described by the NHS as an uncommon type of dementia that causes problems with behaviour and language. It affects the frontal and temporal lobes of the brain. Because early memory loss is less common than in other types of dementia, it is often not recognised straight away, and the person's behaviour can be misread as rudeness, laziness or a mental health problem.

This guide helps care and support staff understand what they may see, why it happens and how to respond respectfully. It is general information, not clinical advice, and it complements our guide to dementia care training requirements.

Who it affects

The NHS says most cases occur in people aged 45 to 65, although it can develop in younger or older people. That is earlier than many other types of dementia, so people with frontotemporal dementia may still be working, raising a family or carrying financial commitments when symptoms begin. Services designed around older people do not always fit their needs.

Behaviour and personality changes

The NHS lists a range of changes in behaviour and personality. These can include:

• being insensitive or rude, and acting impulsively
• loss of motivation
• losing the ability to empathise with others
• repetitive or compulsive behaviours, such as humming or hand-rubbing
• changes in eating habits
• poor personal hygiene

These changes are caused by damage to the parts of the brain that control behaviour, judgement and social awareness. The person is not choosing to be difficult. Staff who understand this can respond with patience and avoid taking comments or actions personally.

Language problems

Language difficulties can include using words incorrectly, losing vocabulary and repeating the same phrases. Some people gradually lose the ability to speak altogether. Keep sentences short, give one instruction at a time, allow plenty of time to respond, and use gestures, pictures and objects to support understanding. Our guide to communication aids in dementia care has practical ideas.

Thinking and everyday skills

The NHS says problem-solving, planning and abstract thinking become harder as the condition progresses, while memory problems are less common at the start and tend to appear later. A person may look capable in conversation but struggle with planning a meal, managing money or following a routine. Do not judge ability by how confident someone sounds.

Physical changes in later stages

In later stages the NHS describes slow, stiff movements similar to Parkinson's disease, swallowing difficulties and loss of bladder and bowel control. Early referral for swallowing assessment and good continence care protect dignity and health.

Treatment and support

The NHS states there is currently no cure for frontotemporal dementia and no treatment that will slow it down. Support focuses on managing symptoms: medicines for some behavioural symptoms, physiotherapy, occupational therapy and speech and language therapy, plus memory cafes, support groups and help from NHS and social services. The condition develops gradually over several years, and the NHS gives average survival after symptom onset as around 8 to 10 years, though this varies significantly.

Responding to distress without reaching for medicine first

NICE guideline NG97 says to look for clinical or environmental causes of distress, such as pain or delirium, before treating pharmacologically, and to offer psychosocial and environmental approaches first. Antipsychotics are limited to people at risk of harming themselves or others, or in severe distress, at the lowest effective dose and for the shortest time. See our guide to STOMP and antipsychotic medication review for how this works in care homes.

Practical approaches that help

• Keep routines predictable. A consistent day reduces confusion and frustration.
• Channel repetitive behaviours safely. Offer an alternative activity rather than stopping the behaviour outright, unless it is unsafe.
• Manage eating. If eating habits change, monitor weight and food choices and involve a dietitian where needed.
• Stay calm with socially inappropriate comments. Redirect without shaming the person.
• Support families. Relatives often find the change in personality the hardest part. Signpost to support groups.

Capacity and decision-making

Never assume capacity is present or absent because of a diagnosis. Under the Mental Capacity Act, capacity is assessed for each decision, and every practicable step should be taken to help the person decide. If someone lacks capacity for a decision, the best interests process applies. See our guide to Mental Capacity Act and DoLS training.

Training for staff

NICE says all staff working with people living with dementia need foundation training in person-centred care, with further training on responding to agitation and reducing antipsychotic use for those who need it. Teams supporting younger people with frontotemporal dementia also benefit from understanding behaviour and language changes in particular. Browse our CPD courses for care teams.

Key points to remember

• Frontotemporal dementia mainly affects behaviour and language, and memory problems tend to come later.
• Most cases occur between 45 and 65 years of age, according to the NHS.
• There is no cure, so support focuses on symptoms, communication and quality of life.
• Treat behaviour as communication and look for causes of distress before medicine.
• Assess capacity for each decision and support families.

Sources

• NHS: Frontotemporal dementia, overview and symptoms (nhs.uk), accessed October 2026
• NICE guideline NG97: Dementia, assessment, management and support (nice.org.uk), accessed October 2026