Living with Frontotemporal Dementia

Side effects. 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.

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

Diet. Hyperorality and the abuse of food, especially sweets, can be symptoms 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, or distract the patient with other activities.

Exercise. 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.

Rest. 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.

Sexuality. Frontotemporal dementia may affect the patient's sex life. On the one hand, the disease can lead to both an increase and a decrease in the patients' sexual desire. On the other hand, the behavioral disturbances inherent in the disease can cause the patient to exhibit socially inappropriate sexual behaviors.

Emotional impact. 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. If the diagnosis is made in the initial stages, in which the patients maintain their capacity for judgment, it is important that patients themselves decide the care he or she wants to receive according to the progression of the disease (Advance Living Document). In cases where this is not possible, it will be the family or the competent authorities who make these decisions. In this sense, the figure of the social worker can help and guide decision-making during the illness and inform about the social resources available in each case.

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.

Social impact. 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, medical professionals may conduct a genetic counselling programme to provide the patient and their relatives with further information.

Travel. In the early stages of the disease, the patient may be able to travel relatively normally, especially in those patients whose symptoms are limited to language disorders. Travel is less advisable in patients with behavioral disorders.