Experiences of caring for a family member with Parkinson‘s disease: a meta-synthesis.
OBJECTIVE: The aim of this qualitative meta-synthesis was to search and then synthesise family caregivers‘ experiences of providing care to individuals with Parkinson‘s disease (PD).
METHOD: A systematic search resulted in the identification of 11 qualitative studies. Noblit and Hare’s seven-stage approach was used to provide a higher-order interpretation of how family caregivers‘ experienced the effects of taking on a caregiving role.
RESULTS: The process of reciprocal translation resulted in four overarching themes: (1) the need to carry on as usual – ‘the caregiver must continue with his life’; (2) the importance of support in facilitating coping – ‘I’m still going back to the support group’; (3) the difficult balancing act between caregiving and caregiver needs – ‘I cannot get sick because I’m a caregiver‘; (4) conflicts in seeking information and knowledge – ‘maybe better not to know’.
CONCLUSION: The themes reflected different aspects of family caregivers‘ lives that were affected as a result of caring for a relative diagnosed with PD and these raise challenges for more simplistic theories of family caring and appropriate support structures. The findings also highlight several recommendations for clinical practice.
KEYWORDS: Parkinson‘s disease; caregiver; caregiving; family PMID: 27802771 DOI: 10.1080/13607863.2016.1247414
Patients With Parkinson Disease and Caregiver Burden: Risk Assessment.
Keeping the person with dementia and the informal caregiver together: a systematic review of psychosocial interventions.
Rausch A1, Caljouw MA1, van der Ploeg ES1. | | Author information | | | | Abstract | | BACKGROUND: | | Social support, relationships, and closeness are emphasized as important by both people with dementia and their informal caregivers. Psychosocial interventions might be helpful to reinforce the relationship between a person with dementia and his or her informal caregiver. Therefore, this review explores what types of psychosocial interventions have been provided for people with dementia and their informal caregivers together, and the effectiveness of these interventions. | | METHODS: | | PubMed, PsychInfo, Cinahl, and references of key papers were searched for studies describing a psychosocial intervention for people with dementia and their informal caregivers together. Psychosocial interventions were defined as focusing primarily on psychological or social factors. | | RESULTS: | | A total of seven publications describing six studies were identified as eligible for inclusion in this review. Interventions ranged in focus from skills training to viewing/making art. The methodology of the studies varied, especially regarding the outcome measures used. The results of individual studies were mixed. A narrative synthesis of the included studies is given. | | CONCLUSION: | | Although caregiving dyads emphasize the importance of their relationship, this is mostly not taken into consideration in the design and effect evaluations of the interventions. Improved research is needed on this subject, which focuses on people with dementia living in the community and those living in nursing homes. | | KEYWORDS: | | Alzheimer; caregiving dyad; dementia; informal caregiver; psychosocial intervention; quality of life | | PMID: | | 27890029 | | DOI: | | 10.1017/S1041610216002106 | |
Neurol Ther. 2016 Nov 22. [Epub ahead of print]
Informal Care Time and Cost in a Large Clinical Trial Sample of Patients with Mild to Moderate Alzheimer’s Disease: Determinants and Level of Change Observed.
Lacey L1, Bobula J2, Niecko T3, Leibman C4. | | Author information | | Abstract | | INTRODUCTION: | | We evaluate the association between caregiver (informal) time/cost and illness severity from two recently completed clinical trials of an investigational drug for Alzheimer’s disease (AD). | | METHODS: | | Changes from baseline caregiver time were calculated and treatment effects analyzed using a restricted maximum likelihood-based mixed model for repeated measures. Four separate models were then estimated to examine the association between caregiver time costs and the clinical endpoints measured during the trials, including cognition (MMSE), function (DAD), behavior (NPI), global disability (CDR) and dependence (DS). | | RESULTS: | | Caregiver time cost was significantly associated with all clinical measures of illness severity with a 1-unit change in MMSE, DAD, NPI, CDR and DS associated with a 11.57%, 4.81-4.97%, 3.58-3.67%, 42.52% and 71.05% change, respectively, in primary caregiver time cost. The association between caregiver time cost and DS was the strongest of all the associations examined. | | CONCLUSION: | | Caregiver time costs increase with increasing AD severity in all key domains of AD (cognition, function, behavior, global disability and dependence on others). Our analysis demonstrated that patient dependence is a particularly important predictor of caregivertime costs and should be considered as a potential outcome measure in intervention clinical trials in AD. | | FUNDING: | | Pfizer Inc. and Janssen Alzheimer Immunotherapy Research and Development. | | KEYWORDS: | | Alzheimer’s disease; Informal caregiver; Time and costs | | PMID: | | | | 27878522 | | | | DOI: | | | | 10.1007/s40120-016-0056-2 | | | |