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Don't forget about me! Decision making by people with dementia
- Authors:
- WHITLATCH Carol J., MENNE Heather L.
- Journal article citation:
- 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 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.
Family caregivers and in-home respite options: the consumer-directed versus agency-based experience
- Authors:
- FEINBERG Lynn Friss, WHITLATCH Carol J.
- Journal article citation:
- Journal of Gerontological Social Work, 30(3/4), 1998, pp.9-28.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This American study examines the preferences for and characteristics of consumer-directed (i.e. direct pay) and professionally-managed (i.e. agency-based) respite for family caregivers of adults with cognitive impairments. Respondents in both groups reported the same "most important" reasons for preferring their respective mode of respite: wanting to be sure their love one was safe, and having good, reliable and trustworthy help. The data revealed a clear preference for consumer direction in respite care in the home. Practice implications are addressed for improving the delivery of in-home respite care.
The stress process of family caregiving in institutional settings
- Authors:
- WHITLATCH Carol J., et al
- Journal article citation:
- Gerontologist, 41(4), August 2001, pp.462-473.
- Publisher:
- Oxford University Press
This study adapts the Stress Process Model (SPM) of family caregiving to examine the predictors of depression in a sample of caregivers with demented relatives residing in suburban skilled nursing facilities. The authors interviewed family caregivers of family members residing in skilled nursing homes using a variety of measures to assess primary stressors, secondary strain, nursing home stressors, and caregiver depression. Results indicated that positive resident adjustment to placement was best predicted by the closeness of the resident-caregiver relationship and nursing home stressors. Caregiver strain, resident adjustment, and nursing home stressors best predicted caregiver adjustment. In turn, the best predictors of caregiver depression included caregiver age, caregiver adjustment to the nursing home, and nursing home stressors. These results suggest that caregiver depression is closely linked to how well both the resident and caregiver adjust to the nursing home environment. Results also indicate that by broadening the SPM to include stressors common to the nursing home experience, researchers will be able to understand more clearly the specific components of the stress process that may lead to depression in family caregivers of persons living in nursing homes.
Shared decision-making in dementia: a review of patient and family carer involvement
- Authors:
- 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 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)
Existential loss as a determinant to well-being in the dementia caregiving dyad: a conceptual model
- Authors:
- PIIPARINEN Rich, WHITLATCH Carol J.
- Journal article citation:
- 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, 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.
How well do family caregivers know their relatives' care values and preferences?
- Authors:
- 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.
Dyadic relationship scale: a measure of the impact of the provision and receipt of family care
- Authors:
- SEBERN Margaret D., WHITLATCH Carol J.
- Journal article citation:
- Gerontologist, 47(6), December 2007, pp.741-751.
- Publisher:
- Oxford University Press
This American study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. The authors examined the reliability, discriminant, and concurrent validities of the instrument. The data supported a two-factor DRS that included negative dyadic strain (patient =.84; caregiver =.89) and positive dyadic interaction (patient =.86; caregiver =.85). The analysis supported the DRS's construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad.
Dyadic intervention for family caregivers and care receivers in early-stage dementia
- Authors:
- WHITLATCH Carol J., et al
- Journal article citation:
- Gerontologist, 46(5), October 2006, pp.688-694.
- Publisher:
- Oxford University Press
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.
Measuring the values and preferences for everyday care of persons with cognitive impairment and their family caregivers
- Author:
- WHITLATCH Carol J.
- Journal article citation:
- Gerontologist, 45(3), June 2005, pp.370-380.
- Publisher:
- Oxford University Press
This study describes the development and psychometric properties of a 24-item scale to be used in both research and practice settings that assesses the everyday care values and preferences of individuals with cognitive impairment and the perceptions of family caregivers about their relative's values and preferences for care. The Values and Preferences Scale was developed on the basis of previous measures used with cognitively intact samples with additional items generated by the authors in consultation with an advisory committee of practitioners, researchers, family caregivers, and persons with cognitive impairment. A total of one hundred and eleven individuals with mild to moderate cognitive impairment and their family caregivers were interviewed for the study taken from population samples in San Francisco in the USA. Results of a factor analysis determined that the Values and Preferences Scale can be divided into two domains or subscales for persons with cognitive impairment and their family caregivers (i.e., Environment–Social Network and Personal Autonomy). These domains were found to have good internal consistency for both the individuals and their caregivers. Evidence of their psychometric properties compared with measures of depression, quality of life, and involvement in decision making was also found. These findings suggest that persons with cognitive impairment are able to express values and preferences about care they currently receive or will need in the future. Further application and testing of the Values and Preferences Scale should prove useful to practitioners who assist those with cognitive impairment and their caregivers with daily care decisions and the development of care plans.
Are persons with cognitive impairment able to state consistent choices?
- Authors:
- FEINBERG Lynn Friss, WHITLATCH Carol J.
- Journal article citation:
- Gerontologist, 41(3), June 2001, pp.374-382.
- Publisher:
- Oxford University Press
... and their family caregivers. Fifty-one people with cognitive impairment and their carers were interviewed. All persons with cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. The family caregiver was interviewed once. Persons with mild to moderate cognitive impairment are able to respond consistently to questions about