Opinion enhancing quality of life in dementia

Westphal, Alissa; Hall, Wendy; Chiu, Edmond

doi:10.1111/j.1758-5872.2011.00139.x

Cited by 3 publications

(4 citation statements)

References 8 publications

(9 reference statements)

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“…All too often, interventional outcomes impact a broad scope of disease aspects, and either a larger number of clinical outcomes are needed or global measures of improvement are utilized. Building a body of evidence in HRQOL will remain elusive unless a “gold standard” is developed and agreed upon and utilized consistently as outcome measures in clinical studies (Westphal et al, 2011). …”

Section: Hrqol Overviewmentioning

confidence: 99%

A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases

Paulsen¹,

Nance²,

Kim³

et al. 2013

Progress in Neurobiology

145

108

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The past decade has witnessed an explosion of evidence suggesting that many neurodegenerative diseases can be detected years, if not decades, earlier than previously thought. To date, these scientific advances have not provoked any parallel translational or clinical improvements. There is an urgency to capitalize on this momentum so earlier detection of disease can be more readily translated into improved health-related quality of life for families at risk for, or suffering with, neurodegenerative diseases. In this review, we discuss health-related quality of life (HRQOL) measurement in neurodegenerative diseases and the importance of these “patient reported outcomes” for all clinical research. Next, we address HRQOL following early identification or predictive genetic testing in some neurodegenerative diseases: Huntington disease, Alzheimer's disease, Parkinson's disease, Dementia with Lewy bodies, frontotemporal dementia, amyotrophic lateral sclerosis, prion diseases, hereditary ataxias, Dentatorubral-pallidoluysian atrophy and Wilson's disease. After a brief report of available direct-to-consumer genetic tests, we address the juxtaposition of earlier disease identification with assumed reluctance towards predictive genetic testing. Forty-one studies examining health related outcomes following predictive genetic testing for neurodegenerative disease suggested that (a) extreme or catastrophic outcomes are rare; (b) consequences commonly include transiently increased anxiety and/or depression; (c) most participants report no regret; (d) many persons report extensive benefits to receiving genetic information; and (e) stigmatization and discrimination for genetic diseases are poorly understood and policy and laws are needed. Caution is appropriate for earlier identification of neurodegenerative diseases but findings suggest further progress is safe, feasible and likely to advance clinical care.

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Section: Hrqol Overviewmentioning

confidence: 99%

A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases

Paulsen¹,

Nance²,

Kim³

et al. 2013

Progress in Neurobiology

145

108

View full text Add to dashboard Cite

show abstract

“…Over time, people with dementia may need to transition to a residential aged care facility, which provides accommodation, personal care and access to a range of health‐care services 2,3 . Person‐centred models of dementia care are growing in Australia, driven by recognition of the benefits of holistic approaches that provide quality care 4 . Person‐centred dementia care values the perspectives and preferences of people with dementia and ensures these are meaningfully included in therapy, enabling engagement and partnership.…”

Section: Introductionmentioning

confidence: 99%

“…models of dementia care are growing in Australia, driven by recognition of the benefits of holistic approaches that provide quality care. 4 Person-centred dementia care values the perspectives and preferences of people with dementia and ensures these are meaningfully included in therapy, enabling engagement and partnership.…”

mentioning

confidence: 99%

Role of occupational therapy in person‐centred dementia care: Exploring family member and clinician perceptions

Richards,

Mills,

Hitch

2024

Australas J Ageing

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ObjectiveThis study aimed to explore the role of occupational therapy in dementia facilities using a person‐centred model of care, from the perspective of family members, occupational therapists and multidisciplinary health professionals.MethodsA descriptive qualitative approach was adopted, and all data were evaluated using thematic analysis. Semi‐structured interviews were completed with eight family members and five multidisciplinary health professionals. Four occupational therapists practising in dementia care also provided qualitative data via an online survey.ResultsThe analysis identified two key themes around perceptions of occupational therapy in person‐centred dementia care. These themes were (1) the poorly defined scope of the occupational therapy role and (2) the perceived features of the occupational therapy role.ConclusionsWhile the perceptions and experiences of participants varied, the scope of this role is currently poorly defined. Occupational therapists in this setting commonly facilitate positive social interaction and present‐oriented occupational engagement with residents and are also recognised as building workforce capacity with multidisciplinary colleagues. Without a clearly defined scope of practice, the role of occupational therapy in enabling health and well‐being for people with dementia cannot be coherently articulated. This could lead to underutilisation of occupational therapy services, and lost opportunities for residents to experience improved health and well‐being.

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“…According to Jeon et al (2013), the multi-component education toolkit was developed to aid the care givers in managing elderly with dementia's behavioral and psychological symptoms of dementia. Similarly, in a research on supporting the Asian population of elderly with dementia with non-pharmacological psychosocial intervention, give them support in reducing and managing the symptoms of dementia and will leads to a better quality of life (Westphal, Hall, & Chiu, 2011).The Cognitive Stimulation Therapy (CST) is one of the psychosocial interventions thathave been used in treating elderly patients who are suffering from dementia to increase the cognition and quality of life. Also, according to Spector, Orrell, and Woods (2010), CST also plays an important role in improving the language functioning of dementia patients.…”

Section: 10 Introductionmentioning

confidence: 99%

The Outcome Of Using The Cognitive Stimulation Therapy On Demented Elderly In Malaysia

Yong

Kim

Shuen

2017

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The Malaysian government estimated that in 2013, 5.5% of the Malaysian population comprises of senior citizens aged 60 years old and above. Recent research had revealed that 14.3% of the older Malaysians are at risk of Major Neurocognitive Disorder (MND; also known as dementia). As the elderly population increases gradually in the country, the chances of them suffering from MND are also expected to increase. MND is often associated with a decline in memory or thinking skills which are severe enough to affect the ability to perform everyday activities among those who are diagnosed with these symptoms. Cognitive Stimulation Therapy (CST) is a brief treatment for those suffering from mild to moderate MND. However, the efficacy of this treatment has not been evident in Malaysia.The aim of the present study is to identify the effectiveness of CST in stabilizing the declination of cognitive functions, as well as improving the quality of life among elderly suffering from mild to moderate MND. Thirty elderly diagnosed with mild and moderate MND will be invited to participate in a single group pre-post trial, involving a 45 minute CST treatment to be administered for 14 weeks on a regular weekly basis. The participants will be selected from residents of care centers elderly at Klang Valley area. The outcomes and effectiveness of the CST will be determined by the Montreal Cognitive Assessment (MoCA), and Quality of Life-Alzheimer’s Disease (QOL-AD). The former instrument will be used to examine the cognitive abilities of the elderly, while the latter will be used to determine issues related to the quality of life based on the participant and caregivers rating report. As the CST efficacies has been proven in several countries such as the United Kingdom, Hong Kong and Japan, the present study anticipates that it will also be effective in the Malaysia context and helps in treating MND.

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Opinion enhancing quality of life in dementia

Cited by 3 publications

References 8 publications

A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases

A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases

Role of occupational therapy in person‐centred dementia care: Exploring family member and clinician perceptions

The Outcome Of Using The Cognitive Stimulation Therapy On Demented Elderly In Malaysia

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