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Textile Memories
Published in Paul A. Rodgers, Design for People Living with Dementia, 2022
The target group of informal carers was actively involved in this study and formed one of the three focus groups consisting of people with dementia, carers, and medical experts. The 18 informal caregivers cared for nine people with frontotemporal dementia and nine people with Alzheimer's disease. The relatives were predominantly elderly, as were the people with dementia.
Care needs and experiences with services in young onset dementia
Published in Marjolein de Vugt, Janet Carter, Understanding Young Onset Dementia, 2021
After a diagnosis has been established, families of a young person with dementia have to deal with a disrupted future perspective. However, many caregivers perceive the diagnosis as an important answer and explanation for the changes that have occurred in the period before the diagnosis and the problems and difficulties they have experienced (van Vliet et al., 2011). After the diagnosis, there is a need for information about what lies ahead, how dementia will progress, what people can expect, and which care options are available to them (Ducharme et al., 2014). This is often complicated when someone is not aware of dementia and refuses any help, delaying the initiation of (formal) care, such as home care, buddy support or daycare. This especially applies to frontotemporal dementia, which is a highly prevalent cause of young onset dementia. Impaired disease awareness can also occur in other subtypes of dementia, even at an early stage of dementia. However, in many cases, disease awareness will be relatively intact in the person with young onset dementia and with that also awareness of the daily consequences. This especially applies to younger people living with Alzheimer's disease, in whom disease awareness remains intact for a longer period of the caregiving trajectory compared to those individuals with dementia at old age (van Vliet et al., 2013). This allows for a family-oriented approach in advance care planning, increasing the likelihood that a fit between the care needs of all family members and help and support can be achieved during the caregiving trajectory.
Neurology
Published in Kaji Sritharan, Jonathan Rohrer, Alexandra C Rankin, Sachi Sivananthan, Essential Notes for Medical and Surgical Finals, 2021
Kaji Sritharan, Jonathan Rohrer, Alexandra C Rankin, Sachi Sivananthan
This is a group of disorders characterised by frontal/temporal lobe atrophy, often with young onset (<65 years). There are three main syndromes: frontotemporal dementia – personality change/behavioural symptoms.semantic dementia – loss of semantic memory, i.e. conceptual knowledge.progressive non-fluent aphasia – impaired speech production.Other causes of dementia – it is important to rule out ‘reversible’ causesMetabolic: Vitamin B12/folate deficiency, hypothyroidism, Wilson’s diseaseInflammation/infection: HIV, multiple sclerosis, cerebral vasculitis, SLE, neurosyphilisDegenerative: Huntington’s disease, progressive supranuclear palsy, CJD Alcohol/toxicStructural: chronic subdural haematoma, tumours
The incidence and prevalence of motor neurone disease in South Australia
Published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2023
Jackson Luker, Richard Woodman, David Schultz
Table 1 characterizes the patient cohort and outlines the body regions first affected by MND symptoms. The two patients whose initial symptomatology was suggestive of frontotemporal dementia were categorized as “other”. The most common region of onset was the upper limbs (32.81%). Those with bulbar onset tended to have poorer survival (27.72 ± 18.90 months). Sex was statistically significantly associated with the region of onset (p = 0.005). Bulbar onset was more frequent in women (42.1%) than men (21.1%), with upper limb onset being the most frequent in men (37.3%) versus women (27.19%). The mean age of symptom onset was higher in the bulbar region, particularly in women (70.10 years ± 10.37; male 65.33 years ± 11.04) than upper limb (female 62.19 ± 11.26 years; male 61.09 ± 13.68) and lower limb regions (female 65.13 ± 13.08; male 62.37 ± 10.45). There were six subjects who had multiple regions involved at symptom onset, usually bulbar and upper or lower limb.
Cultural differences in caring for people with dementia: a pilot study of concern about losing face and loneliness in Chinese American and European American caregivers
Published in Clinical Gerontologist, 2023
Sandy J. Lwi, Brett Q. Ford, Robert W. Levenson
Within our sample, 66% of caregivers were spouses, 25% were adult children, 5% were friends or other relatives, and 4% declined to provide identifying information. For all participants, caregiver culture matched the culture of the person with dementia. Regarding the person with dementia, 61% of caregivers were caring for a person who had Alzheimer’s disease (AD; n = 44), 28% had frontotemporal dementia (FTD; n = 20), and 11% had either vascular dementia, corticobasal syndrome, Parkinson’s disease, progressive supranuclear palsy, or dementia with Lewy bodies (n = 8). See Table 1 for additional demographic data by culture. Missing demographic data were handled using listwise deletion. For cultural comparisons of dementia type, see Supplementary Table 1.
Amyotrophic lateral sclerosis in the Faroe Islands – a genealogical study
Published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2021
Malan Johansen, Kirsten Svenstrup, Ólavur Mortensen, Guðrið Andorsdóttir, Bjarni Á Steig, Poul Joensen, Torben Hansen, Maria Skaalum Petersen
Study subjects were of Faroese ancestry (n = 43), diagnosed with ALS from 1987 to 2016 according to the El Escorial diagnostic criteria. Onset was defined as self-reported month/year of first symptoms of reduced muscle power and classified as bulbar or spinal type onset (3). At least one patient also developed frontotemporal dementia. Patients were categorized into three groups based on degree of relationship: definite, probable and possible fALS (1). Two definitions of fALS were used; a strict definition only including ALS patients with at least one first- or second-degree relationship (definite or probable) and an extended definition also including individuals with possible fALS (limited to ALS families with ≥ three cases within three generations) (1). This study adheres to the Declaration of Helsinki and was approved by the Faroese Ethical Committee and the Faroese Data Protection Agency.