A Husband With Frontotemporal Dementia

In this article, we will explain Frontotemporal dementia, a progressive neurodegenerative disease. We will talk about the characteristics of the disease, the different types of FTD, and the heritability of the disease. In addition, we will provide practical advice on how to support someone who is suffering from FTD.
Frederika Malichová

Frederika Malichová

Neuroscientist at the University Of Cambridge.

Understanding Husband's Frontotemporal Dementia

If your husband has been diagnosed with Frontotemporal dementia, it's crucial to understand that this condition can cause drastic changes in his behaviour, language, and motor skills.

Frontotemporal dementia can have multiple faces and it is a challenging journey, requiring tolerance, understanding of the disease, and support.

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The early signs of Frontotemporal Dementia (FTD) can vary depending on the specific subtype of FTD and the individual. However, some common early signs include changes in behavior, such as social withdrawal, disinhibition, apathy, and compulsive behaviors. Language-related symptoms, such as difficulty speaking or understanding speech, word-finding difficulties, and loss of reading and writing skills, can also be early signs. It's important to note that FTD can be misdiagnosed initially as a psychiatric condition or Alzheimer's disease. Early diagnosis and intervention are crucial for managing the symptoms and providing appropriate care [1, 2, 3].

Caregivers can support a spouse with Frontotemporal Dementia (FTD) by participating in tailored interventions like the Partner in Balance program, which helps them find a balance between caregiving and personal life, and cope with behavioral and communication difficulties [1]. They can also benefit from joining support groups tailored to their specific needs, which provide opportunities to share problems, learn from others, and establish new contacts [2]. Additionally, caregivers can use online resources for comprehensive family support and counseling [3, 4].

What Is Frontotemporal Dementia?

Frontotemporal dementia (FTD) is a term used to describe a group of neurodegenerative diseases that are characterised by changes in behaviour, executive function, or language [1].

It belongs to a group of diseases called dementia, which are known to be progressively worsening neurodegenerative diseases [1]. This type of dementia is quite rare, however it is common in patients who are younger than 65 [1].

Oftentimes the disease gets misdiagnosed as the symptoms of the disease mimic other psychiatric disorders [2]. This is mainly due to the behavioural component of the symptoms [2]. However, the disease is different from dementia with Lewy bodies or Alzheimer's disease.

During FTD, neurons in the frontal and temporal lobes of the brain degenerate. This is caused by a progressive buildup of certain proteins, causing the neurons to die. These neurons are responsible for social behaviour, personality, and speech [3].

The disease has different clinical phenotypes which can be categorized into

Around 50% of all cases are the behavioral variant of FTD which involves personality changes, behavioral problems, and cognitive decline [4].

However, as the disease progresses, other symptoms start to appear as well.

Although the majority of FTD cases are sporadic, there is also a hereditary element to the disease known as familial frontotemporal dementia. It isusually caused by genetic mutations in Tau, Progranulin, C9orf72, and TDP-43 genes [5].

Although there is no specific treatment for the disease, with the progressing understanding of the molecular basis of FTD, therapies are slowly beginning to emerge [1].

How To Provide Support To A Husband With Frontotemporal Dementia?

Seeing your loved one suffer from FTD is challenging. Not only does the disease affect the individual suffering, but also the family, making the situation even harder.

Providing support for an individual with FTD is difficult, because of the complex emotional and behavioral symptoms of the disease. We may observe changes in personality, apathy, or disinhibition which all lead to high levels of stress and burden for caregivers and the family [8]

One key tip to prevent feelings of loneliness and isolation is to inform your family and friends of the situation [9]. Further, it is crucial to talk to your healthcare professionals about the changes happening as it may speed the process of diagnosis and appropriate support [10].

Support groups can also be beneficial, because they serve as a platform for sharing problems and solutions regarding the disease [11]. Such support groups can be found online and can provide more information and counselling [12, 13].

In addition to that, interventions like Positive Behaviour Support have shown benefits in managing the challenges of FTD [8]. Further, it is crucial that you will respect the integrity of your husband and his hobbies even after the onset of the symptoms.

In conclusion, providing support for someone with FTD involves a multifaceted approach that addresses the unique challenges of the condition, provides emotional support, and facilitates access to appropriate healthcare services.

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Frederika Malichová

Frederika Malichová

Frederika is a postgraduate researcher at the University of Cambridge, where she investigates new biomarkers for Frontotemporal Dementia and other tauopathies. Her research has been published at prestigious conferences such as the Alzheimer’s Association International Conference 2023. She obtained her BSc in Biomedical Sciences from UCL, where she worked closely with the UK Dementia Research Institute.