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How To Care For Someone With Frontotemporal Dementia?

Frontotemporal disorders, also known as frontotemporal dementia, can range from a wide spectrum of symptoms. Caring for someone who has frontotemporal dementia is emotionally and physically taxing and requires extensive effort. Caregivers to such patients may have to face numerous challenges, such as loss of work, stress, deteriorating health, day-to-day medical care management, complicated decisions about long-term care, and nerve-wracking end-of-life concerns.

If you are a caregiver to a patient with frontotemporal dementia or are about to be one, this writing is for you. Let us look into how you can care for them, frontotemporal dementia treatment, and all you need to know about it. Let’s get started!

How does FTD Differ from Other Types of Dementia?

Dementia itself is not a disease but is an umbrella term covering a wide array of psychological and neurological disorders that affect memory, cognition, and behavior. The neurological conditions that come under this term usually worsen over time and have no cure as of yet. Frontotemporal dementia (FTD) is considered one of the most common causes of dementia in individuals aged sixty and older but is often misconstrued with other forms of dementia.

FTD itself is an umbrella term and covers a wide array of overlapping neurodegenerative disorders. FTD primarily affects the temporal and frontal lobes of the brain. The frontal lobe is responsible for executive functions of humans: the ability to pay attention, make appropriate decisions, multitask, think, and execute plans. This lobe also regulates motor function, impulse control, judgment, and personality. The temporal lobe, in contrast, manages the processes of memory, speech, and language.

It is typical for people with FTD to develop apparent symptoms in their 50s. However, that is not the case every time, as some people may even start exhibiting symptoms in their 20s or much later in their 80s. FTD’s earlier onset compared to other dementias results in drastic implications: it may develop at a time when an individual is busy living his/her prime life and cripples responsibilities like family and work.

How does Frontotemporal Dementia affect Families?

Frontotemporal Dementia is a taxing disease: people suffering from it and their families typically go through a hard time of changing relationships and worsening medical conditions, especially as the symptoms worsen. Caretakers, spouses, partners, or children may not only have to take up the extensive caretaking responsibilities but also uptake the responsibilities of the patient. They may also have to take up household chores and responsibilities that their partner or spouses may not be able to contribute to.

Children may have to suffer from their parent’s gradual worsening condition or face their loss at the prime time of their lives. Household life can become very stressful, with family members and friends often feeling alienated or embarrassed by the patient’s behavior.

How can FTD affect Work?

People living with Frontotemporal Dementia may have to leave work altogether as they are likely to face difficulties in basic work skills such as planning, organizing, meeting deadlines, and following through on their responsibilities. Deteriorated brain function may cause them to take more time on seemingly uncomplicated tasks. They may even lose their jobs simply because they are too unwell to perform their duties responsibly, no matter how hard they try to do so.

Caregivers may have to take up an additional job to support the health expenditure or compensate for the patient’s job loss. Or, they may have to reduce their work hours or give up their day job altogether to care for the patient with FTD and run the house seamlessly.

Although employment attorneys can help by offering advice and information about family leave, employee benefits, and disability if needed, the process is complicated and time-consuming.

Stages of Fronto Temporal Dementia

Early-Stage frontotemporal dementia

The early stage of FTD entails seemingly insignificant happenings that hint at the development of a more complex underlying disorder. Memory is often distorted initially and is the primary reason this stage is often misconstrued for other psychiatric illnesses.

The early stage is often dotted with the behavioral type of FTD, also known as the behavioral variant FTD, which affects personal and social behavior. Patients may do inappropriate things, show blatant disregard for the typical social boundaries, behave carelessly or impulsively, lose interest in self-care and hobbies, and face deterioration in judgment. Concern for others can also be seen visibly diminished, and apathy is on the rise.

The first stage of FTD may also include the language-affecting types along with the primary progressive aphasia, where an individual faces difficulty articulating and using the correct names for familiar objects.

Middle-Stage frontotemporal dementia

Symptoms of the middle stage frontotemporal dementia are pretty similar to other kinds of dementia, such as Alzheimer’s disease. Individuals may need more assistance to complete their daily life functions such as bathing, dressing, and grooming. Behavioral disturbances and language difficulties may become more rampant, consistent, and frequent.

Late-Stage frontotemporal dementia

The late stage of FTD also resembles the late stage of Alzheimer’s disease, with an observed impairment in language, mobility, cognition, functionality, and behavior. Patients may require continuous care in this stage to ensure safety and adequate care, as they are likely to forget even primary notions and indulge in life-threatening situations. Several opportunistic infections also take force, and death is probably caused by conditions such as pneumonia.

Frontotemporal dementia stages’ life expectancy varies across different people, ranging from less than two years to ten years or even more. Studies show that patients with FTD live for about six to eight years after they start exhibiting symptoms, but this varies widely.

How to Care for Someone with FTD?

FTD has no cure, no way to diminish its progression, and no way to reverse it. However, caregivers can help manage symptoms such as speech impairment, immobility, and behavioral disturbances.

Behavioral changes management 

Caregivers need to overlook these behavioral changes as the “illness talking” and accept whatever they’re saying instead of taking it into their heart or challenging it. Reasoning or arguing with these people may not be of any use, so it is better to devote your energy to a favorable cause.

Language problem management

Caregivers need to adopt specific ways of managing language discrepancies in patients with FTD, such as using more straightforward sentences as if talking to a young child, speaking clearly and slowly, waiting appropriately for responses, and asking for clarification politely if you do not understand. You can also use drawing, gesturing, or an album with labeled photos of objects and people to communicate without speaking. It is advisable to talk to a speech-language pathologist to determine the best strategies and tools.

Movement problems management

Fronto Temporal Dementia can cause significant problems in mobility and cause complications in swallowing, balancing, walking, and moving. Although medications and therapies, such as occupational or physical therapy, can help relieve these disorders, they are not entirely curable.

NeuroX offers affordable online psychological and neurological care right at your doorstep. You can get expert advice from our American board-certified and fellowship-trained sub-specialists with expertise in all complicated diseases of the brain, including but not limited to dementia, stroke, epilepsy, multiple sclerosis, movement disorders, etc. You can also get online consultation from NeuroX’s expert board certified neurologist within 24-48 hours of appointment booking. Head over to NeuroX right now and book your slot!

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