____________________________________________________________________ Frontotemporal Dementia
The first challenge that families of those with FTD may face is obtaining an accurate diagnosis. The process can involve years of uncertainty and stress before the correct clinical diagnosis of FTD is made. Even during the diagnosis process, support for families begins with information and education about FTD. Accurate information can lead to understanding and a greater sense of control over the stressful situation. It is important for families and caregivers to understand that the behavior changes they observe are the result of the disease. Their loved one may display behaviors that are embarrassing, offensive, self-centered, uncaring, and aggressive, with complete lack of insight about how the behavior affects others. The caregiver may feel like he/she is suddenly living with a stranger. The aggression, disinhibition, and poor judgment associated with FTD can put family members at risk of harm. Because FTD affects people at a relatively young age, there may still be children in the home. Families should recognize the risk to others in the home and seek help creating strategies to keep themselves and other family members safe. Language may be impaired in people with FTD, making com- munication difficult. This can interfere not only with commu- nication between the patient and the caregiver, but it can also limit participation in larger social activities. Speech therapy can provide new approaches to communication, helping not only the patient but also the caregiver. Because FTD usually begins at a relatively young age, it can cause a significant financial burden for families. There may be loss of income, and retirement benefits may be affected because the patient is unable to continue working. Financial and legal issues that should be addressed include insurance, social security disability, financial planning for the future (when additional care will be needed), power-of-attorney arrangements, and a living will. Social workers, financial advi- sors, and attorneys are resources available to families to help address these issues. The demands on caregivers increase as FTD progresses. Care- givers will be required to provide more supervision and increas- ing assistance for activities of daily living. While providing care for an individual with FTD, the caregiver may also be grieving the loss of his or her previously healthy loved one. Family caregivers can become physically and emotionally exhausted, and they may feel isolated in their role as caregiver. Interven- tions to help reduce caregiver stress include an individualized patient management plan, environmental changes to promote safety and facilitate care, and strengthening caregiver coping strategies and skills. Family caregivers should be encouraged to ask for and accept help in caring for their loved one with FTD, allowing them to take time for themselves and address their own health needs. Connection with community resources may also be helpful. Community resources for FTD caregiv- ers include national organizations such as the Association for Frontotemporal Degeneration, attorneys and financial plan- ners, social service programs, adult day care programs, respite care, support groups, and individual or family counseling.
Family caregivers should look ahead and consider how they wish care to be provided to their loved one as FTD progresses. Patients with FTD will become more dependent and more difficult to safely manage at home by a family caregiver as the disease progresses. Social workers can be a good resource to caregivers as they consider options such as extra in-home nurs- ing care, care communities, and long-term care facilities. Locat- ing an appropriate care facility that accepts patients with FTD can be challenging. These patients are often younger, stronger, and more active than the typical residents of care facilities. Facility staff may need education and support to understand the unique features of FTD and to learn how to provide care to these patients while maintaining a safe environment for all residents in the facility. Nurses play an important role in caring for those with FTD and providing support to their families. Nurses interact with patients with FTD and their families in the outpatient clinic setting, in-home care setting, and long-term care facility and may be involved in monitoring symptoms, developing and implementing individualized patient care plans, and providing direct patient care. It is important for all healthcare providers to coordinate care for the patient with FTD. All members of the interdisciplinary healthcare team can support families by listening to them, providing ongoing information and educa- tion about FTD, offering guidance to improve caregiving skills, and helping families connect to appropriate resources. PROGRESSION OF FTD The prognosis for people with FTD is poor. FTD worsens progressively, usually over several years, and patients require increasing behavioral supervision and personal care. Eventu- ally, people with advanced FTD become mute and bedbound and require full care at home or in a care facility. As patients with FTD become more debilitated, they are vulnerable to complications such as infections and falls. The most common cause of death in people with FTD is infection (e.g., pneumo- nia) [3; 8]. The average duration of the disease is 6 to 13 years, but it can range from 2 to 20 years [3; 5]. RESEARCH RELATED TO FTD The goals for research on FTD include gaining a better understanding of the pathology; identifying causes and risk factors (genetic and environmental); improving the diagnosis of FTD through enhanced neuroimaging, biomarkers, and characterization of clinical features; developing therapies to treat, cure, or prevent FTD; and exploring new ways to support family caregivers. However, research on FTD is challenging. It is an uncommon disease, so awareness is low, there are fewer potential subjects available for research studies, and there is a relatively small market for medications. FTD is a complicated disease with a wide variety of presentations (behavior, language,
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MDRI2026
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