scholarly journals Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic

2013 ◽  
Vol 2013 ◽  
pp. 1-6
Author(s):  
Brandalyn C. Riedel ◽  
Jamie K. Ducharme ◽  
David S. Geldmacher
Keyword(s):  
Quality Of Life ◽  
Treatment Success ◽  
Family Members ◽  
Family Quality Of Life ◽  
Care Needs ◽  
Family Unit ◽  
Dementia Patients ◽  
People With Dementia ◽  
The Family

Objective. To understand who dementia patients identify as their family and how dementia affects family life.Background. Dementia care is often delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life.Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the affected person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs.Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family-focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response.Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that affects life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia.

scholarly journals Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

2020 ◽  
Vol 17 (23) ◽  
pp. 9007
Author(s):  
Cristina Jenaro ◽  
Noelia Flores ◽  
Belén Gutiérrez-Bermejo ◽  
Vanessa Vega ◽  
Carmen Pérez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Parenting Stress ◽  
Parental Stress ◽  
Family Members ◽  
Family Quality Of Life ◽  
Quality Of Life Scale ◽  
The Family ◽  
The Impact

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

scholarly journals 416 - Family quality of life in Neurodegenerative Diseases and associated factors

2021 ◽  
Vol 33 (S1) ◽  
pp. 39-39
Author(s):  
Eva González ◽  
Alba Aza ◽  
Isabel Vicario-Molina ◽  
María Gómez-Vela ◽  
Mª Begoña Orgaz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurodegenerative Diseases ◽  
Rural Areas ◽  
Family Members ◽  
Explanatory Models ◽  
Border Region ◽  
Family Quality Of Life ◽  
The Family ◽  
The Impact

Introduction:Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.Method:The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics.Results:The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs).Conclusions:These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs.

scholarly journals Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

Management of dementia

2020 ◽  
pp. 557-570
Author(s):  
Sarah Cullum ◽  
Tesema Taye
Keyword(s):  
Quality Of Life ◽  
Social Care ◽  
Ethical Issues ◽  
Family Members ◽  
Dementia Care ◽  
Psychosocial Aspects ◽  
People With Dementia

The cornerstone of dementia care is social care, and much of this is delivered by the families and carers of people with dementia. The management of dementia should therefore focus on supporting and developing the care provided by family members and carers in the community, because their education and enablement will help to optimize the quality of life for all people living with dementia. This chapter concentrates on the assessment and management of people with dementia in the early and later stages of the disorder. At both stages we consider engagement, autonomy, respect, protection, and ethical issues, as well as describing the clinical and psychosocial aspects of treatment. The emphasis is on the broader principles of management, which apply to people with dementia of any aetiology, their families, carers, and communities, and take into account the different settings in which they may present.

Evaluation of Alzheimer's Australia Vic Memory Lane Cafés

2010 ◽  
Vol 23 (2) ◽  
pp. 246-255 ◽  
Author(s):  
Briony Dow ◽  
Betty Haralambous ◽  
Courtney Hempton ◽  
Susan Hunt ◽  
Diane Calleja
Keyword(s):  
Quality Of Life ◽  
Support Groups ◽  
Social Inclusion ◽  
Service Providers ◽  
Family Members ◽  
Memory Loss ◽  
Well Being ◽  
Human Research Ethics ◽  
People With Dementia

ABSTRACTBackground: This paper describes the evaluation of the Memory Lane Café service in Victoria, Australia. The Alzheimer's Australia Vic Memory Lane Café model aims to provide a social and educational service to people living with dementia and their carers, family members or friends. Dementia is a serious health issue in Australia, with prevalence estimated at 6.5% of people over 65 years of age. Living with dementia has significant social and psychological ramifications, often negatively affecting quality of life. Social support groups can improve quality of life for people living with dementia.Methods: The evaluation included focus groups and surveys of people with dementia and their carers, staff consultation, service provider interviews, and researcher observation. The Melbourne Health Mental Health Human Research Ethics Committee approved the project. Participants included people with dementia (aged 60 to 93 years, previously enrolled in the Alzheimer's Australia Vic's six-week Living With Memory Loss Program), their carers, friends and/or family members, staff working in the Cafés, and service providers with links to the Cafés.Results: This evaluation found that Memory Lane Cafés promote social inclusion, prevent isolation, and improve the social and emotional well-being of attendees. However, Cafés did not meet the needs of all potential attendees.Conclusions: The evaluation recommended that existing Café services be continued and possibilities for extending the Cafés be explored. Based on evaluation outcomes, the Department of Health Victoria is funding four additional pilot programs in café style support services.

Quality of life in dementia patients: nursing home versus home care

2011 ◽  
Vol 23 (10) ◽  
pp. 1692-1700 ◽  
Author(s):  
Azlina Wati Nikmat ◽  
Graeme Hawthorne ◽  
S. Hassan Al-Mashoor
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Informal Care ◽  
Population Aging ◽  
Depression Scale ◽  
Short Version ◽  
Care Needs ◽  
Dementia Patients ◽  
Early Dementia

ABSTRACTBackground: Care management providing a high quality of life (QoL) is a crucial issue in dealing with increasing numbers of dementia patients. Although the transition from informal (home-based) care to formal (institutional) care is often a function of dementia stage, for those with early dementia there is currently no definitive evidence showing that informal or formal care provides a higher QoL, particularly where informal care is favored for local cultural reasons. This paper outlines the research protocol for a study comparing formal and informal care in Malaysia. It seeks to provide evidence regarding which is more appropriate and results in higher QoL in early dementia.Methods: This is a quasi-experimental study design involving 224 early dementia patients from both nursing home and community settings. Participants will be assessed for cognitive severity, QoL, needs, activities of daily living, depression and social isolation/connectedness by using the Mini-Mental State Examination (MMSE), Cognitive Impairment Scale – 4 items (CIS-4), EUROPE Health Interview Survey-Quality of Life (WHO8), Assessment of Quality of Life (AQoL8), Camberwell Assessment of Need for the Elderly – Short Version (CANE-S), Barthel Index (BI), Cornell Scale for Depression (CSDD), Geriatric Depression Scale – 15 items (GDS-15), and Friendship Scale (FS) respectively.Conclusion: This study aims to provide a better understanding of care needs in early dementia. Given population aging, the study findings will provide evidence assisting decision-making for policies aimed at reducing the burden of caregiving and preserving the QoL of dementia patients.

scholarly journals FAMILY QUALITY OF LIFE IN PRACTICE: A PRACTICAL APPLICATION OF THE FQOL-2006 SURVEY

2018 ◽  
Vol 9 (4) ◽  
pp. 40-48
Author(s):  
Kierstyn Butler
Keyword(s):  
Quality Of Life ◽  
Service Providers ◽  
Family Quality Of Life ◽  
Practical Application ◽  
The Family ◽  
Master's Thesis ◽  
Research Opportunity ◽  
New Research ◽  
The Impact

As families are increasingly recognized as the primary caregivers for their family members with disabilities, family quality of life (FQOL) research has focused on the impact of disability within the family. This field of research seeks to gain an understanding of the complex challenges and successes families have, with the goal of assisting families in expanding their FQOL. To accomplish this task, the FQOL survey (FQOL-2006) was created. Developed in 2000 and later revised, the FQOL-2006 survey has been used in over 20 countries to explore the perceptions of families, parents, and main caregivers of individuals with intellectual and developmental disabilities. While there has been considerable research using the FQOL-2006 survey, there is limited research that focuses on integrating the survey into practice. This article discusses a possible application of the survey in practical contexts by reflecting on some of the qualitative data collected from my recent FQOL master’s thesis study. Specifically, the article highlights the mutual benefits that service providers and families could receive by integrating the FQOL-2006 survey into service models, as it could allow professionals to establish a framework for assessing each client-family’s overall quality of life, including their greatest supports, strengths, challenges, and needs. This application provides a new research opportunity for the FQOL field for both researchers and professionals.

scholarly journals The Unforgettables: a chorus for people with dementia with their family members and friends

2018 ◽  
Vol 30 (6) ◽  
pp. 779-789 ◽  
Author(s):  
Mary Sherman Mittelman ◽  
Panayiota Maria Papayannopoulou
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Pilot Study ◽  
Effect Size ◽  
Family Members ◽  
Positive Effects ◽  
Cohen’S D ◽  
People With Dementia ◽  
Cohen's D

Summary/AbstractOur experience evaluating a museum program for people with dementia together with their family members demonstrated benefits for all participants. We hypothesized that participation in a chorus would also have positive effects, giving them an opportunity to share a stimulating and social activity that could improve their quality of life. We inaugurated a chorus for people with dementia and their family caregivers in 2011, which rehearses and performs regularly. Each person with dementia must be accompanied by a friend or family member and must commit to attending all rehearsals and the concert that ensues. A pilot study included a structured assessment, take home questionnaires and focus groups. Analyses of pre-post scores were conducted; effect size was quantified using Cohen's d. Results showed that quality of life and communication with the other member of the dyad improved (Effect size: Cohen's d between 0.32 and 0.72) for people with dementia; quality of life, social support, communication and self-esteem improved (d between 0.29 and 0.68) for caregivers. Most participants stated that benefits included belonging to a group, having a normal activity together and learning new skills. Participants attended rehearsals in spite of harsh weather conditions. The chorus has been rehearsing and performing together for more than 6 years and contributing to its costs. Results of this pilot study suggest that people in the early to middle stage of dementia and their family members and friends can enjoy and learn from rehearsing and performing in concerts that also engage the wider community. It is essential to conduct additional larger studies of the benefits of participating in a chorus, which may include improved quality of life and social support for all, and reduced cognitive decline among people with dementia.

Families raising a child with disability – Social and cultural and political considerations: Israeli Jewish and Arab Families

2017 ◽  
Vol 4 (38) ◽  
pp. 5-21
Author(s):  
Dana Roth ◽  
Ivan Brown
Keyword(s):  
Quality Of Life ◽  
Family Quality Of Life ◽  
Minority Populations ◽  
Policy And Practice ◽  
Political Status ◽  
The Family ◽  
Almost All ◽  
General Service ◽  
Child With A Disability

Social, political, and cultural realities have an effect on all members of society. For families with a child with disability there are additional challenges. Being a minority family with a child with a disability adds to the challenges. This study compares the family quality of life (FQOL) of families with a child with disability in Jewish and Arab communities in Israel. Main caregivers of children with disabilities of 158 Jewish and 105 Arab Israeli responded to the Family Quality of Life Survey, which operationalizes FQOL as a construct of six measurement dimensions in nine core family life domains. Overall, Jewish families in Israel reported higher FQOL than Arab families. Although eight of the nine domains were rated highly for Importance, the main outcome measures Attainment and Satisfaction were rated lower for almost all domains. Some domains contributed to overall differences more than others. The patterns also differed for the Jewish and Arab families. Social/cultural/political status of families are important for policy and practice professionals to consider as having possible impact on the family of a child with a disability. Further research is needed to develop application models for addressing the needs of minority populations in designing programs into the general service delivery system.

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