Introduction

Frontotemporal dementia (FTD) is a group of non-Alzheimer dementias that is a main cause of early-onset dementia.¹ It specifically affects the frontal or temporal lobes of the brain, or both.¹ The frontal and temporal lobes are two of the four major lobes of the brain, each playing distinct roles in various cognitive, emotional, and sensory functions. FTD is often observed clinically by changes in personality and behavior, as well as the presentation of progressive aphasia, which is a language disorder affecting an individual’s ability to communicate.¹ The neurological dysfunction usually seen in FTD can sometimes be confused with other diseases such as Parkinson’s or motor neuron disease, so an accurate diagnosis is important. 

An individual suffering from FTD can have their quality of life lowered due to the direct physical impact of the disease, making it challenging to carry out activities of daily living. Moreover, the social and psychosocial impacts of being unable to perform daily activities can also reduce an individual’s quality of life. The quality of life of caregivers and family members must also be considered when reviewing the impacts of FTD. Treatment can be supportive, but social and mental health services are needed alongside familial counselling to aid patients living with FTD.¹

Categories of FTD

FTD is divided into two main sub-categories, the behavioural variant FTD (bvFTD) and the primary progressive aphasia (PPA). This is based on the main features observed at clinical presentation.¹ PPA has been divided more descriptively into 3 sub-types: progressive non-fluent aphasia (PNFA), semantic dementia (SD), and logopenic progressive aphasia (LPA).²

Behavioural variant FTD

Behavioural variant frontotemporal dementia (bvFTD) causes a gradual decline in interpersonal skills and executive functions, alongside changes in emotional responses.³ In addition, behaviours such as apathy, disinhibition, and obsessive tendencies often occur. Early signs of bvFTD can be subtle, including a slight change in humour or hobbies. Socially inappropriate behaviours and altered eating habits are key features that separate bvFTD from Alzheimer's disease. Patients often have deficits in social cognition, such as recognising emotions and understanding social cues. This can significantly impact interpersonal interactions. Behavioural assessments, including social cognition tests, are crucial for accurate diagnosis and differentiation from other forms of dementia.³

Primary progressive aphasia (PPA)

Primary progressive aphasia (PPA) is characterised by a progressive deterioration in expressive and comprehension language abilities. Initially, other cognitive functions and behaviours typically remain intact. Individuals with PPA may continue with daily activities and hobbies that don't heavily rely on language skills. However, some individuals may eventually develop broader dementia symptoms or frontal lobe-related behavioural changes. Early in the condition, patients often struggle with naming, word-finding, and speech fluency.²

Progressive non-fluent aphasia (PNFA)

PNFA is similar to Broca’s aphasia, where speech becomes challenging and is grammatically simplified, often with phoneme errors. Although patients retain comprehension for simple sentences and object recognition, complex syntax may still cause issues. PNFA can include apraxia of speech and agrammatism, with some patients exhibiting specific genetic mutations like those in the progranulin gene. This variant is distinguished by speech production issues without significant motor speech problems.²

Semantic dementia

Semantic dementia presents with fluent but impaired speech, which is often observed with difficulty in naming objects and understanding word meanings, even for common items. Patients often demonstrate surface dyslexia and may fail to comprehend irregular words. While language production is relatively unaffected, semantic dementia significantly impacts word comprehension and object knowledge. This syndrome is usually linked to FTD pathology, with some cases involving progranulin mutations or, less commonly, Alzheimer’s disease pathology.²

Logopenic progressive aphasia (LPA)

LPA causes difficulties in word retrieval and naming, leading to pauses in speech that can seem non-fluent. Unlike PNFA, LPA patients typically do not exhibit agrammatism or motor speech abnormalities. They struggle with repeating phrases and may make phonemic errors, but their comprehension of single words and simple sentences remains intact. Logopenic PPA is often associated with Alzheimer’s disease, demonstrating how PPA can overlap with Alzheimer’s pathology. This overlap complicates the distinction between Alzheimer’s and FTD, as some PPA cases may ultimately be diagnosed with Alzheimer’s pathology.²

Impact on daily activities

FTD significantly disrupts daily life, making routine tasks increasingly difficult. FTD could make personal care difficult as individuals may struggle to carry out basic hygiene tasks like bathing or dressing, due to cognitive decline and lack of motivation. Coordination issues could further complicate simple activities like brushing teeth or buttoning clothes.

Managing a household whilst suffering from FTD would be challenging as planning and organisational skills deteriorate. Tasks like paying bills and cooking become very difficult and may be neglected or not done safely.

Communication struggles are common in forms of FTD that affect language. Inappropriate social behaviour alongside the challenge of holding a conversation could make individuals more reserved socially. It could also discourage them from carrying out daily activities, such as grocery shopping.

FTD often forces early retirement or job loss due to declining cognitive abilities and behavioural changes. This can cause a financial burden on FTD sufferers and their families.

Impacts on mobility and physical activities

FTD affects the patients’ physical abilities, leading to mobility issues and reduced physical activity.

Individuals may experience problems with balance and coordination, increasing the risk of falls and making tasks like walking or using utensils challenging. Maintaining an exercise routine becomes difficult as cognitive decline leads to forgetfulness and apathy. This can result in a more sedentary lifestyle, worsening physical and mental health.

Psychosocial impact

FTD deeply affects emotional well-being and social relationships, contributing to significant psychosocial challenges. The loss of cognitive and functional abilities can cause anxiety, depression, and a decline in self-esteem, especially as individuals struggle with tasks they once found easy. Personality changes and behavioural issues strain relationships, potentially leading to caregiver burnout and emotional distress within families. Social withdrawal could occur as individuals with FTD struggle to engage in conversations and activities. The stigma and lack of understanding surrounding FTD can further isolate them, leading to loneliness and depression for both patients and caregivers.

Impacts on quality of life

Being unable to carry out daily activities and physical exercise can reduce the quality of life of an individual living with FTD. Disruptions to relationships and social activities can cause mental health issues, in addition to losing independence. Caregivers and families can also be impacted as the individual would be unable to carry out their daily activities. The following are the main reasons for the reduction in caregivers' and families’ quality of life:⁴

• Caregiver depression
• Sleep – poor sleep quality in caregivers due to disruption during the night and behavioural issues
• Stress and guilt – caregivers can experience stress and guilt as they try to prioritise caring for someone with FTD alongside other responsibilities and work
• Costs and social impacts – direct costs include medical care and equipment, whilst indirect costs include caregivers losing time to carry out their jobs

The most useful things for helping caregivers involved in the care of FTD patients are education and psychosocial support from FTD-knowledgeable healthcare professionals.⁴ Hence, this must be used more frequently to aid those caring for FTD sufferers who struggle to carry out daily activities.

Summary

FTD, which can be divided into further subtypes (bvFTD and PPA), impacts patients’ physical health greatly. This makes it challenging to perform daily activities such as grocery shopping or socialising. Furthermore, it can be challenging for an FTD sufferer to go to work or undergo education due to symptoms experienced, such as cognitive dysfunction. It is important to manage FTD and provide support to help the patient and caregivers maintain a good quality of life.