Dementia: the International Journal of Social Research and Practice, 18(6), 2019, pp.2122-2139.
Publisher:
Sage
Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1...
(Edited publisher abstract)
Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention. Design and methods: Persons with early stage dementia (n = 128) and their caregivers (n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction. Results: Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care.
(Edited publisher abstract)
Subject terms:
randomised controlled trials, dementia, evaluation, intervention, health education, counselling, psychosocial intervention, care planning, person-centred care, carers, care plans, service uptake;
MILLER Lyndsey M., WHITLATCH Carol J., LYONS Karen S.
Journal article citation:
Dementia: the International Journal of Social Research and Practice, 15(5), 2016, pp.1141-1157.
Publisher:
Sage
This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from...
(Publisher abstract)
This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.
(Publisher abstract)
Subject terms:
dementia, decision making, families, informal care, carers, patients, participation;
Dementia: the International Journal of Social Research and Practice, 10(2), May 2011, pp.185-201.
Publisher:
Sage
When a loved one is diagnosed with dementia, existing issues can surface. These relate not only to the progressive loss of a person, but to a carer’s own sense of security as well. With that in mind, this article describes a conceptual model for dementia caring. It describes how existing threats can affect a carer’s appraisal of the care situation, and therefore how a carer copes. Also...
When a loved one is diagnosed with dementia, existing issues can surface. These relate not only to the progressive loss of a person, but to a carer’s own sense of security as well. With that in mind, this article describes a conceptual model for dementia caring. It describes how existing threats can affect a carer’s appraisal of the care situation, and therefore how a carer copes. Also, it is suggests that carer coping, as manifested through avoidance or acceptance of loss, will influence behavioural interaction within the caregiving dyad, where communication and decision making between caregiver and the person with dementia is predominantly inequitable or equitable. Finally, it is suggested that the type of dyadic behaviour is a precursor to the overall dyadic well-being. In terms of intervention particular emphasis is put on both individual and social factors that negatively influence a carer’s ability to integrate the emotional costs related to dementia and its care.
Generations, 33(1), Spring 2009, pp.66-73. Published online.
Publisher:
American Society on Aging
Research shows they are able to provide consistent responses to questions about a variety of preferences, even in advanced stages. Maintaining the autonomy of people with dementia is a difficult balancing act for their families and friends, who face many tough decisions. These decisions are often made on behalf of impaired relatives who at some point will become unable to make decisions...
Research shows they are able to provide consistent responses to questions about a variety of preferences, even in advanced stages. Maintaining the autonomy of people with dementia is a difficult balancing act for their families and friends, who face many tough decisions. These decisions are often made on behalf of impaired relatives who at some point will become unable to make decisions on their own and vary depending on stage and type of illness. While maintaining the dignity, autonomy, and personhood of people with dementia is critical, it is equally important to balance the needs and preferences of the person with dementia with the ability of the family caregiver to ensure that those preferences are reflected in the care received. Although there are no easy answers to these challenges, this paper proposes alternatives and options to help families make decisions throughout the progression of a family member's dementia.
WHITLATCH Carol J., PIIPARINEN Rich, FEINBERG Lynn Friss
Journal article citation:
Dementia: the International Journal of Social Research and Practice, 8(2), May 2009, pp.223-243.
Publisher:
Sage
This study examines the psychometric properties of the Values and Preferences Scale (VPS) and compares the responses of 267 persons with cognitive impairment with the responses of their family caregivers to determine the accuracy of the caregivers' perceptions of their relatives' care values and preferences. Exploratory factor analyses examined whether a consistent factor structure could be found for the VPS for both persons with cognitive impairment (PWCIs) and family caregivers. Analyses also determined whether family caregivers were accurate in their perceptions of their relative's care preferences. Results indicated that the VPS was best divided into four factors or subscales (i.e., Burden, Safety/Quality of Care, Autonomy, and Social Interactions) all of which were found to have adequate internal consistency for persons with cognitive impairment and family caregivers. Caregivers generally had a good sense of what preferences were most important to their relatives (i.e., issues of safety and quality of care), but often underestimated the importance of certain values and preferences. These findings support previous work suggesting that practitioners consider incorporating an assessment of values and preferences for everyday care when working with persons with cognitive impairment and their family caregivers.
This study examines the psychometric properties of the Values and Preferences Scale (VPS) and compares the responses of 267 persons with cognitive impairment with the responses of their family caregivers to determine the accuracy of the caregivers' perceptions of their relatives' care values and preferences. Exploratory factor analyses examined whether a consistent factor structure could be found for the VPS for both persons with cognitive impairment (PWCIs) and family caregivers. Analyses also determined whether family caregivers were accurate in their perceptions of their relative's care preferences. Results indicated that the VPS was best divided into four factors or subscales (i.e., Burden, Safety/Quality of Care, Autonomy, and Social Interactions) all of which were found to have adequate internal consistency for persons with cognitive impairment and family caregivers. Caregivers generally had a good sense of what preferences were most important to their relatives (i.e., issues of safety and quality of care), but often underestimated the importance of certain values and preferences. These findings support previous work suggesting that practitioners consider incorporating an assessment of values and preferences for everyday care when working with persons with cognitive impairment and their family caregivers.
Dementia: the International Journal of Social Research and Practice, 7(3), August 2008, pp.341-358.
Publisher:
Sage
This analysis examines the ability of persons with mild to moderate dementia (MMSE scores 13—30 and/or a dementia diagnosis) to provide consistent and accurate information. Data come from interviews with 213 persons with dementia (PWDs) and their family caregivers (CG). Consistency was assessed by determining agreement between responses provided by PWDs during two in-person interviews. Accuracy...
This analysis examines the ability of persons with mild to moderate dementia (MMSE scores 13—30 and/or a dementia diagnosis) to provide consistent and accurate information. Data come from interviews with 213 persons with dementia (PWDs) and their family caregivers (CG). Consistency was assessed by determining agreement between responses provided by PWDs during two in-person interviews. Accuracy was assessed by determining agreement between PWD responses and CG responses. Overall, PWDs provided consistent and accurate responses to fact-based questions and were consistent in their responses to state-dependent items. Less impaired respondents were more consistent in their responses to fact-based items. Among respondents with more severe impairment, there were no significant differences in consistency by question type. This work responds to the need to gain a better understanding of the opinions and experiences of dementia and offers further evidence that many PWDs can provide consistent and accurate information. Findings support increased involvement of individuals with dementia in research and care planning.
Subject terms:
information management, research methods, care planning, dementia;
Research underscores how autonomy and decision-making involvement may help to enhance the quality of life of older adults; however, individuals with dementia are often excluded from decision making that is related to their daily functioning. This study used a modified version of the Stress Process Model to consider the stress process of individuals with chronic illness, and in particular...
Research underscores how autonomy and decision-making involvement may help to enhance the quality of life of older adults; however, individuals with dementia are often excluded from decision making that is related to their daily functioning. This study used a modified version of the Stress Process Model to consider the stress process of individuals with chronic illness, and in particular to explore the predictors of decision-making involvement among individuals with dementia (n = 215). Data from individual with dementia (IWD)- family caregiver dyads in the United States were collected. Relying primarily on data from the IWD, a hierarchical multiple regression analysis was used to determine the predictors of the IWD's decision-making involvement. Results indicate that individuals who report more decision-making involvement are younger, female, have more education, have a nonspousal caregiver, have fewer months since their diagnosis, exhibit fewer problems with activities of daily living and fewer depressive symptoms (based on caregiver report), and place more importance on autonomy/self-identity. The authors discuss the importance of autonomy and impairment levels for understanding the decision-making involvement of persons with dementia.
Subject terms:
long term conditions, stress, user participation, decision making, dementia;
The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counselling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention that increases the care receiver's active participation...
The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counselling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention that increases the care receiver's active participation in his or her care plan, develops positive communication patterns between the caregiver and care receiver, increases knowledge and understanding about available services, and assists the dyad through the emotional turbulence of a diagnosis of Alzheimer's disease or other dementing condition. EDDI was developed in response to research and clinical findings that suggested that care dyads in the early stages of dementia and dementia care are able to engage in a dialogue about future preferences for care, and that this discussion could address some of the uncertainty and worry experienced by each member of the dyad. As part of a feasibility trial, 31 dyads participated in the EDDI program. Measures were obtained on the intervention's implementation, including the number of sessions attended, caregiver and care receiver ratings of treatment acceptability and effectiveness, and counsellor ratings of treatment effectiveness. Participant and counsellor evaluations of the EDDI protocol indicated that the intervention was acceptable and satisfactory to the caregivers, care receivers, and counsellors, and that the intervention's goals and objectives were achievable. Implications: These findings indicate that individuals with early-stage dementia and their family caregivers are able to participate in and benefit from a structured intervention that focuses on care planning for future needs.
WHITLATCH Carol J., FEINBERG Lynn Friss, TUCKE Shandra
Journal article citation:
Dementia: the International Journal of Social Research and Practice, 4(2), May 2005, pp.171-185.
Publisher:
Sage
This study examines the ability of persons with cognitive impairment (n = 111) to provide consistent and accurate responses to questions about demographic characteristics and basic preferences. Persons with cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. Family caregivers were interviewed once within the same time period. In general persons with mild to moderate cognitive impairment (i.e. MMSE scores from 13-26) were accurate and reliable in their ability to respond to questions about demographics and basic preferences. These results add further support to past findings that persons with cognitive impairment can be active participants in both research and practice.
This study examines the ability of persons with cognitive impairment (n = 111) to provide consistent and accurate responses to questions about demographic characteristics and basic preferences. Persons with cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. Family caregivers were interviewed once within the same time period. In general persons with mild to moderate cognitive impairment (i.e. MMSE scores from 13-26) were accurate and reliable in their ability to respond to questions about demographics and basic preferences. These results add further support to past findings that persons with cognitive impairment can be active participants in both research and practice.