Reducing the burden of caregivers in Huntington's by using an online interventional neuropsychological approach: a pilot study

Santos, Tatiana Henrique; Pantaleão, Fernanda Naomi; Machado, Tatiana Namura; Luiz, Leonardo de Oliveira; Capato, Tamine T.C.

doi:10.1590/1980-5764-DN-2023-0118

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Short Communication • Dement. neuropsychol. 18 • 2024 • https://doi.org/10.1590/1980-5764-DN-2023-0118 linkcopy

Reducing the burden of caregivers in Huntington's by using an online interventional neuropsychological approach: a pilot study

Reduzindo a sobrecarga dos cuidadores na doença de Huntington usando uma abordagem neuropsicológica interventiva online: um estudo piloto

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ABSTRACT

Huntington's disease (HD) is a hereditary, neurodegenerative disease characterized by motor, cognitive, and behavioral issues. As the disease progresses, people become dependent on their caregivers leading to a significant burden. There is a lack of effective neuropsychological intervention to support this population.

Objective: To develop an online neuropsychological intervention and evaluate its effects in decreasing the HD caregiver burden.

Methods: This qualitative pilot study was conducted online during the COVID-19 pandemic in Brazil. We selected a convenience sample of five informal caregivers of HD patients (mean 46.2 years old). At baseline, participants were assessed via an individual online neuropsychology interview/screening, covering demographic data. Subsequently, we conducted 20 online 90-minute sessions of the psychological consultation over 12 months. Each session was structured in three stages: 1) Welcoming; 2) Breathing and mindfulness practice; and 3) Discussion of themes about the group's needs based on the main complaints. A second intervention assessment was applied.

Results: None of the caregivers were provided with details about HD at the time of diagnosis and later care. The necessity to care for a person with a rare genetic disease was added to caregivers' already-existing working routine and home services, causing a symptom of overload. After the neuropsychological intervention, all participants reported feeling less burdened by caring, improved self-care and conflict resolution with the person with HD through expanding behavioral repertoire focused on emotions and communication.

Conclusion: Online neuropsychologic intervention can reduce the burden of HD caregivers. More comprehensive studies should investigate these findings.

Keywords: Huntington Disease; Caregiver Burden; Patient Care Team; Rehabilitation; Telerehabilitation

Session	Theme	Techniques and interventions
1	Presentation	Questions about the current context of each participant.
2	Participants' individual history	Choose a movie genre that represents your personal life and explain why.
3	Relationship with the person with HD.	Questions about people with HD and their relationships with caregivers. How do you feel when caring for these people?
4	Self-perception	Medicine leaflet set (describe it as a medicine, mentioning dosage, indications, and adverse effects).
5	How do I deal with what I can not change?	Basic instructions for understanding some HD problems¹⁶.
6	Self-care	Questions focused on the analysis of self-care practices and suggestions for tasks during the recess period of care (insertion of self-care practices into the routine).
7	Return of sessions after recess	Questions about routine and current emotional state and during the period without assistance (school recess).
8	Maintenance of the therapeutic relationship	Introduction of a new participant. Continuation of questions about the period without assistance and exchange of information about HD.
9	Formal work and HD	Questions about work, time management, and self-care.
10	Session to clarify doubts about HD.	Explanations about the general and behavioral aspects of HD.
11	Support network	Questions about support network, sharing feelings, and problem solving.
12	Identification and validation of feelings	Request for reports of situations that generate positive and negative feelings, with consequent recognition and validation of these feelings.
13	Identification and validation of feelings	Questions about feelings; reading of the fictional story of a wife of a person with HD aimed at helping to identify, discuss, and validate the feelings of others.
14	Understanding the cause of feelings	Recognition of one's own needs and identification of feelings subsequent to them, practice of three of the four steps of NVC¹⁵.
15	Communication of feelings	Practice the four steps of NVC¹⁵ on the previously introduced fictional character.
16	Communication of feelings	Practice of the four steps of NVC¹⁵ based on situations brought by the participants.
17	Dealing with stress	Body and emotional perception in stressful situations.
18	Tiredness and guilt	Questions and discussion about tiredness and guilt related to the relationship with HD care.
19	Self-care	Questions about self-perception and reinforcement about the need to maintain self-care strategies.
20	Closing session	Questions about the participants' perception of the therapeutic process and sharing of observed changes.

		Caregiver (n=5)
Age, years (mean/SD)		46 (13)
Sex, n
	Female	5
Education level, n (%)
	Complete elementary school	1 (20)
	Complete high school	2 (40)
	Complete higher education	1 (20)
	Incomplete higher education	1 (20)
Profession, n (%)
	Teacher	1 (20)
	Salesperson	3 (60)
	Self-employed	1 (20)
Relationship with the patient, n
	Spouse	4
	Mother	2
	Child	1
	Previous experience as a caregiver for another person with Huntington's disease, n (%)	3 (60)
	Children age, years (mean/SD)	23 (15)

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Academia Brasileira de Neurologia, Departamento de Neurologia Cognitiva e Envelhecimento R. Vergueiro, 1353 sl.1404 - Ed. Top Towers Offices, Torre Norte, São Paulo, SP, Brazil, CEP 04101-000, Tel.: +55 11 5084-9463 | +55 11 5083-3876 - São Paulo - SP - Brazil
E-mail: revistadementia@abneuro.org.br | demneuropsy@uol.com.br

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[TFN1] Abbreviations: HD, Huntington's disease; NVC, Non-violent communication. Notes: Weekly supervisions were conducted after each session. During these supervisions, the activities performed were reviewed, and strategies for the upcoming planned interventions were discussed providing regular monitoring and continuous refinement of therapeutic approaches.