Living with dementia

Side effects of neuroleptic medication (a type of tranquilliser) include drowsiness, stiffness and tremors. These can be avoided or reduced by adjusting the dose of the drug. In general, these drugs should be taken on a temporary basis to control the disease’s behavioural symptoms.

The disease itself may cause the patient to abuse alcohol and/or tobacco. These behaviours should be avoided as far as is possible.

Abuse of food, especially sweets, can be a symptom of the disease. This food abuse should be controlled as far as is possible, as it is harmful to the patient's health, especially those with cardiovascular disease or diabetes. Therefore, it may be a good idea not to buy such food, or to keep it out of reach.

Patients with frontotemporal dementia are advised to stay physically active. Physical exercise can also be beneficial in managing apathy. Meanwhile, some patients may exhibit compulsive exercise behaviours, especially walking. It is important to try to control these behaviours, for example by distracting the person with other activities.

Frontotemporal dementia can lead to a wide range of sleep disturbances. Some patients may suffer from hypersomnolence. They have a tendency to spend too many hours in bed. It is important to stimulate these patients so that they stay active. Other patients experience insomnia and compulsive behaviours at night (night-time walking, etc.). There are behavioural and pharmacological interventions that help manage these behaviours.

Frontotemporal dementia may affect the patient's sex life. It can lead to either an increase or decrease in sexual desire. The patient may exhibit socially inappropriate sexual behaviour due to behavioural disturbances.

A frontotemporal dementia diagnosis can have a significant emotional impact on both the patient and their family. In some cases, patients are in denial about their symptoms and do not recognise the disease. In cases where the main problem is language impairment (primary progressive aphasia), the diagnosis can have an enormous impact that may require specific emotional support.

The emotional impact is especially relevant for the patient's family, who may see their loved one's character and personality change as a consequence of the disease. Living with patients' behaviours can be distressing for caregivers. There are support programmes for dementia caregivers that are beneficial for the caregiver and, indirectly, for the patient.

Frontotemporal dementia also has a significant social impact. The disease often occurs in people under 65 years of age, who sometimes have young children. It may require them to take sick leave, which results in economic damage to the family.

In cases with a genetic component, the possibility of inheriting the mutation that causes the disease can be particularly distressing for the patient's children. In these cases, doctors may conduct a genetic counselling programme to provide the patient and their relatives with further information.