Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort

Gentry, Melanie T.; Lapid, Maria I.; Syrjanen, Jeremy; Calvert, Kendrick J.; Hughes, Samantha R.; Brushaber, Danielle; Kremers, Walter K.; Bove, Jessica; Brannelly, P; Coppola, Giovanni; Dheel, Christina; Dickerson, B. H.; Dickinson, Susan; Faber, Kelley; Fields, Julie A.; Fong, Jamie; Foroud, Tatiana; Forsberg, Leah K.; Gavrilova, Ralitza H.; Gearhart, Deb; Ghoshal, Nupur; Goldman, Jill; Graff‐Radford, Jonathan; Graff‐Radford, Neill R.; Grossman, Murray; Haley, Dana; Heuer, Hilary W.; Hsiung, Ging-Yuek Robin; Huey, Edward D.; Irwin, David J.; Jones, David T.; Jones, Lynne C.; Kantarci, Kejal; Karydas, Anna; Knopman, David S.; Kornak, John; Kramer, Joel H.; Kukull, Walter A.; Lucente, Diane; Lungu, Codrin; Manoochehri, Masood; McGinnis, Scott; Miller, Bruce L.; Pearlman, Rodney; Petrucelli, Len; Potter, Madeline; Rademakers, Rosa; Ramos, Eliana Marisa; Rankin, Katherine P.; Rascovsky, Katya; Sengdy, Pheth; Shaw, Leslie M.; Tatton, Nadine; Taylor, Joanne; Toga, Arthur W.; Trojanowski, John Q.; Weıntraub, Sandra; Wong, Bonnie; Wszołek, Zbigniew K.; Boeve, Bradley F.; Boxer, Adam L.; Rosen, Howard J.

doi:10.1002/alz.12095

Cited by 11 publications

(7 citation statements)

References 47 publications

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“…Burden is lower in caregivers with a strong relationship to the patient 3,10 or with social support 2,4 . Some studies observe a linear increase in caregiver burden over time, 7 whereas others find that burden plateaus or diminishes 11 …”

Section: Introductionmentioning

confidence: 99%

The contribution of behavioral features to caregiver burden in FTLD spectrum disorders

Silverman

Ake

Manoochehri

et al. 2021

Alzheimer's & Dementia

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Section: Introductionmentioning

confidence: 99%

The contribution of behavioral features to caregiver burden in FTLD spectrum disorders

Silverman

Ake

Manoochehri

et al. 2021

Alzheimer's & Dementia

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“…A summary of the needs inferred by participants in this study is detailed in Table 3 (further information available in Appendix S5). Many of these needs are not just unique to genetic counseling and testing and have been previously reported as a requirement of those who are burdened by living with or caring for someone who is affected with ALS/MND/FTD (Gentry et al, 2020;Weisser et al, 2015). testing.…”

Section: Practice Implicationsmentioning

confidence: 99%

Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences

Crook

Jacobs

Newton‐John

et al. 2022

Journal of Genetic Counseling

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Genetic counseling and diagnostic genetic testing is part of the multidisciplinary care of people with amyotrophic lateral sclerosis (ALS, commonly called motor neurone disease, MND) and frontotemporal dementia (FTD). We explored client experiences of genetic counseling and diagnostic testing to inform the care of future families. Semi‐structured interviews with individuals with ALS/MND/FTD or their relatives were conducted. The study was designed to include a wide variety of participants with varying disease status and abilities. Genetic counseling and diagnostic testing experiences were explored using interpretive description methodology. Bioecological theory was used as the framework for the reflexive thematic analysis. Eighteen individuals with ALS/MND/FTD or their relatives from 13 Australian families participated. Three themes were identified: sharing knowledge, (un)supportive care, and ‘circumstance is everything’. Consistent with bioecological theory, one’s genetic counseling experience was informed by individual circumstances, time, and proximal factors. These informed the level of information and support required in the genetic counseling process. Although some client circumstances cannot be changed, efforts could be made to enhance genetic counseling experiences by improving interactions between the client and their care team. Some clients may benefit from further discussions regarding the familial implications of genetic testing, and greater support with family communication. Clients’ needs were derived from the data and will contribute to genetic counseling consensus guidelines.

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“…In Norway and elsewhere, people with YO-FTD do not represent a large group, but they and their families encounter great challenges and extraordinary demands. 2 , 15 , 16 …”

Section: Dementias and Younger People With Frontotemporal Dementiamentioning

confidence: 99%

“…In Norway and elsewhere, people with YO-FTD do not represent a large group, but they and their families encounter great challenges and extraordinary demands. 2,15,16 Compared to people with YO-AD, people with YO-FTD often show a change in their personality, and they have less insight into their own situation. Moreover, carers for people with YO-FTD experience greater distress than other carers due to the patients' erratic behaviour.…”

Section: Dementias and Younger People With Frontotemporal Dementiamentioning

confidence: 99%

Metaphors for the Meaning of Caring for a Spouse with Dementia

Thorsen¹,

Johannessen²

2021

JMDH

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Background Spouses of people with young-onset frontotemporal dementia (YO-FTD) (age 65 years or younger) encounter special challenges. The diagnosis is scarcely known; the early onset is unexpected; and the disease is characterized by symptoms varying from those of other types of dementia. Caring implies increasing hardships, which can be difficult to communicate to others when applying for support. Metaphors create and communicate meaning and are increasingly used in health care and health interventions as ways to better understand the situation. Aim To examine the experiences of spouses of people with YO-FTD and their needs for care and support as expressed through metaphors in narratives of their experiences during the development of the dementia. Methods Qualitative interviews with 16 informants (ten women, six men) were conducted in 2014/2015. They were recruited from seven memory clinics, one municipality dementia team, and a nursing home. Steger’s three-step method for analyzing metaphors was applied. Findings The core metaphors cover experiences of the dementia and the transformation of the spouse, changed roles and relationships between spouses, the transformation of the self, a radical turn of existential life, and relationships with others. Metaphors are words and phrases used to talk about complicated, contradictory, shameful, and/or normatively difficult feelings and reactions as caring spouses. The open themes and, at the same time, provide verbal shields and defences. Metaphors are especially effective for expressing the strength of the reactions in caring as emotional work and are tools for mastering emotions and challenges in life. Conclusion Metaphors give insights into the significant experiences of spouses of partners with YO-FTD and offer personnel in health services a better understanding of their needs for tailored support and help.

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Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort

Cited by 11 publications

References 47 publications

The contribution of behavioral features to caregiver burden in FTLD spectrum disorders

The contribution of behavioral features to caregiver burden in FTLD spectrum disorders

Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences

Metaphors for the Meaning of Caring for a Spouse with Dementia

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