Badanie opublikowane w czasopiśmie medycznym Psychogeriatrics examines the perspective of care partners on symptoms of behavioral variant frontotemporal degeneration (bvFTD).

One of bvFTD’s most common symptoms is anozognozja, which is characterized by a lack of insight into one’s illness and the associated limitations that come with it. Because of anosognosia, care partners of people with bvFTD are often more able to provide an overview of symptoms that will be used to make a diagnosis.

However, as the study’s authors point out, most research on the care partner’s perspective of bvFTD usually focuses on the caregiving burden rather than observations partners can provide on symptoms. Even when care partners’ observations are collected, clinical measures used to diagnose bvFTD and chart its progression are often derived from research on Alzheimer’s disease.

While new bvFTD-specific clinical measures for diagnosis, progression, and disease intervention outcomes are necessary, the authors note that care partner perspectives on relevant symptoms are essential in developing them. They point to AFTD’s Externally Led Patient-Focused Drug Development Meeting and the Głos pacjenta raport to emphasize the need to include a care partner’s perspective.

To help improve tools for diagnosis, progression monitoring, and clinical trial design, the authors interviewed 20 care partners. They hoped to gain insights into the symptoms of bvFTD most relevant to care partners throughout the disease.

While analyzing the responses from care partners, the authors divided the symptoms reported into nine core domains covering core features of bvFTD, such as odhamowanie Lub emotional blunting.

The symptoms of primary concern to care partners changed over time as bvFTD progressed, the study found. At first, care partners tend to be more concerned with external issues like emotional blunting or loss of personal connection; over time, concern tends to shift towards survival.

The authors noted that, without being prompted, many participants voiced concerns about the lack of understanding about bvFTD and the lack of resources they faced as care partners. The study highlights the need for greater FTD awareness throughout healthcare networks worldwide.

Taking this into account, the authors made several recommendations for care partners of people diagnosed with bvFTD:

• Find early support in patient organizations, support groups, friends, and family.
• Arrange legal agreements, financial issues, daytime activity care, and long-term care as soon as possible.
• Explore the use of technological aids in finding ways to handle behavioral, cognitive, and physical symptoms.
• Provide stimulation through a positive, active daily routine incorporating exercise, music, arts/crafts, or any hobbies the diagnosed person enjoys.
• Align the amount of stimuli to the needs of the individual diagnosed.
• Create a safe environment by communicating calmly and avoiding difficult questions.
• Monitor your own needs, and if you need to, seek professional help to look after your mental and physical health.

The study also makes recommendations for healthcare practitioners and researchers conducting clinical studies:

• Develop specific measures targeting socio-emotional, behavioral, and functional symptoms of bvFTD.
• Improve symptomatic treatments to reduce features of bvFTD to make disease management more effective.
• Focus on early-stage interventions in future clinical trial designs.
• Aim for a personalized approach in treating bvFTD, considering the different characteristics of each person with a diagnosis.
• Combine forces to increase knowledge and awareness of bvFTD in care and support networks.

For more information on bvFTD, watch the AFTD webinar What You Should Know About bvFTD.

Are you looking for help with bvFTD-related concerns? Contact AFTD’s HelpLine at 1-866-507-7222 or info@theaftd.org.