Development of a Palliative Care Approach for Primary Progressive Aphasia: My Experience as a Person Living With This Rare Disorder

Douglas, Joanne T.

doi:10.1177/08258597211026711

Cited by 2 publications

(2 citation statements)

References 19 publications

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“…After excluding reports that did not meet inclusion criteria based on the review of the title and abstract, a full-text review for eligibility was performed in ten remaining articles (Liederman et al 1983;Miller et al 1998Miller et al , 2000Seeley et al 2008;Weinstein et al 2011;Papagno et al 2013;Wu et al 2015;Chandra et al 2017;Paulin et al 2020;Douglas 2021). Out of these ten articles, six were excluded after full-text review for the following reasons (i.e., (Liederman et al 1983;Weinstein et al 2011;Chandra et al 2017;Paulin et al 2020;Douglas 2021). In one paper, aphasias were due to a cerebrovascular event or sustained head trauma (Liederman et al 1983).…”

Section: Resultsmentioning

confidence: 99%

Premorbid de novo artistic creativity in frontotemporal dementia (FTD) syndromes

Geser¹,

Mitrovics²,

Haybaeck

et al. 2021

J Neural Transm

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The emergence of new artistic activities or shifts in artistic style in patients with frontotemporal dementia (FTD) syndromes is well documented at or after disease onset. However, a closer look in the literature reveals emerging artistic creativity also before FTD onset, although the significance and underlying pathology of such creative endeavors remain elusive. Here, we systematically review relevant studies and report an additional FTD case to elaborate on artistic activities that developed years before disease manifestation by paying particular attention to the sequence of events in individual patients' biography and clinical history. We further discuss the FTD patient's creative activities in the context of their life events, other initial or "premorbid" dementia symptoms or risk factors described in the literature such as mental illness and mild behavioral impairment (MBI), as well as changes in neuronal systems (i.e., neuroimaging and neuropathology). In addition to our FTD patient, we identified five published cases with an FTD syndrome, including three with FTD, one with primary progressive aphasia (PPA), and one with the behavioral variant of PPA (bvPPA). Premorbid novel creativity emerged across different domains (visual, musical, writing), with the FTD diagnosis ensuing artistic productivity by a median of 8 years. Data on late-life and pre-dementia life events were available in four cases. The late creative phase in our case was accompanied by personality changes, accentuation of personality traits, and cessation of painting activities occurred with the onset of memory complaints. Thus, premorbid personality changes in FTD patients can be associated with de novo creative activity. Stressful life events may also contribute to the burgeoning of creativity. Moreover, primary neocortical areas that are largely spared by pathology at early FTD stages may facilitate the engagement in artistic activities, offering a window of opportunity for art therapy and other therapeutic interventions during the MBI stage or even earlier.

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Section: Resultsmentioning

confidence: 99%

Premorbid de novo artistic creativity in frontotemporal dementia (FTD) syndromes

Geser¹,

Mitrovics²,

Haybaeck

et al. 2021

J Neural Transm

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“…I have a clinical diagnosis of nfvPPA, supported by imaging. I have been fortunate to obtain an early diagnosis and to receive excellent personalized care from a multidisciplinary medical team from the onset, as I have described previously (Douglas, 2014, 2021a, 2021b). The current paper extends that work by explaining how my care has been shaped by early conversations with my SLP and doctors to identify what is most important to me and what gives purpose to my life.…”

Section: Introductionmentioning

confidence: 98%

My experience of living with nonfluent/agrammatic variant primary progressive aphasia: Challenges, compensatory strategies and adaptations

Douglas

2022

Intl J Lang & Comm Disor

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Background: Primary progressive aphasia (PPA) is a rare neurodegenerative brain disorder characterized by declining language ability. There is currently no way to reverse or slow the course of the progressive brain degeneration, nor is there a cure for PPA. Throughout the course of the disease, any treatment must therefore be palliative in nature and should be designed to manage symptoms and improve the quality of life of the affected person. There is little information in the medical literature about strategies to make meaningful improvements to the quality of life of people with PPA written from the perspective of those living with this condition. Aims: I have a clinical diagnosis of the nonfluent/agrammatic variant of PPA (nfvPPA), supported by imaging. In this report I discuss my experience of the progressive loss of language and communication skills, and detail the challenges I have been facing. I also describe how my quality of life has been enhanced by the early initiation of treatment focusing on communication strategies targeted to my specific impairments and designed to support my individual interests and goals. Methods & Procedures: I was fortunate to obtain an early diagnosis from a cognitive neurologist experienced with PPA. From the onset of my language difficulties, I have received excellent personalized care from a multidisciplinary medical team including speech-language pathologists, a cognitive neurologist and other doctors.Main Contributions: My life during the early stage of nfvPPA has been enriched by personalized care focused on supporting the particular activities, interests and goals that are most important and meaningful to me. As my disease has progressed, I have benefited from an evolving range of strategies and adaptations targeted to the specific deficits in the areas of speaking, writing and reading that I have been facing at any given time. In addition, I have adopted methods to enhance the benefit of these language-directed strategies. And I have been employing evidence-based approaches that improve general brain health and thereby indirectly support my language.

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Development of a Palliative Care Approach for Primary Progressive Aphasia: My Experience as a Person Living With This Rare Disorder

Cited by 2 publications

References 19 publications

Premorbid de novo artistic creativity in frontotemporal dementia (FTD) syndromes

Premorbid de novo artistic creativity in frontotemporal dementia (FTD) syndromes

My experience of living with nonfluent/agrammatic variant primary progressive aphasia: Challenges, compensatory strategies and adaptations

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