The latest news from primary health care research: the impact of dementia on couples; and a six-step plan for creating equitable health care
The latest articles profiled by the Primary Health Care Research & Information Service include:
• The impact of dementia upon married couples – findings from a qualitative systematic review; and
• A roadmap for delivering equitable healthcare.
‘Pieces of me missing’: emotional losses arising from the impact of dementia on marriage
Christina Hagger writes:
Inexorable impairment of language, memory, perception, cognitive skills and personality – these are the chilling hallmarks of the chronic, progressive disease of the brain known as dementia.
The haphazard, though ultimately inevitable, decline of these functions not only shrinks the individual but also invades their closest relationships.
The impact of dementia on married couples is explored in a recent qualitative systematic review by University of South Australia researchers David Evans and Emmanuel Lee, and two major themes emerge from their analysis: transition and loss.
The transition theme reflects the progressive and difficult changes in the roles and the relationships as dementia gradually takes hold. These can include the transition from independent spouse to dependent stranger as well as the transition from partner to carer.
Other role changes can see individuals struggling as circumstances force them to take on what they have traditionally perceived as either men’s or women’s work and therefore not their responsibility.
The loss of companionship is also keenly felt; everyday conversations and shared interests disintegrate as the dementia advances, while external social networks can often falter. As a consequence, people can feel lonely and isolated in their marriage, particularly as many are troubled by whether physical intimacy is still appropriate and have concerns about whether their partner has actually consented to it.
However, many people do report a real growth in emotional intimacy with their partner as they attempt to sustain each other through mutual support and caring.
The theme of loss covers the loss of a partner as well as the loss of a marriage. Some husbands and wives report the sadness, anger and frustration of living with only the shell of the person they married.
In one of the studies in the review, a wife with dementia describes this loss: ‘I’m not who he married any more. There’s pieces of me missing. There are little pieces of me sort of breaking away…’
The loss of the marriage often accompanies the cognitive loss of a partner. The confusion and conflict arising from the progression of the disease leads some spouses to question how a marriage can be expected to sustain dementia. Others begin to accept the inevitable loss and wonder what sort of a future they face alone.
Clearly dementia profoundly affects more than the individual. Timely, accurate diagnosis allows early intervention and coordinated management to better support both the person with dementia and their partner.
• Christina Hagger is a Research Fellow (Knowledge Exchange) at PHC RIS.
Evans D, Lee E. Impact of dementia on marriage: A qualitative systematic review. (2013). Dementia: The International Journal of Social Research and Practice, DOI: 10.1177/1471301212473882
Finding answers to racial and ethnic disparities in health care: A roadmap for organisations
Petra Bywood writes:
Equity in health care is essentially about fair access to good quality health services, irrespective of a person’s gender, cultural background, place of residence, or any other personal characteristics.
Increasingly, it is recognised that equity is a fundamental element of good quality care; and that efforts to reduce disparities in care must be an integral part of any quality improvement framework.
Finding answers to persistent racial and ethnic disparities in health care has been the focus of researchers at the Robert Wood Johnson Foundation for the past seven years.
Their Finding Answers: Disparities Research for Change program has funded 33 research projects and conducted 12 systematic literature reviews to identify the most promising interventions.
Consequently, the evidence was used to develop a disparities reduction framework and a six-step roadmap that organisations can tailor to fit their specific settings and population needs.
The six steps comprise:
1) recognise disparities and commit to reducing them;
2) implement a basic quality improvement structure and process;
3) make equity an integral component of quality improvement efforts;
4) design an intervention;
5) implement, evaluate and refine the intervention; and
6) sustain the intervention.
Within each step there are specific practices that are based on the best evidence of effective interventions.
Key practices in the design of effective interventions include: culturally tailoring interventions to meet the needs of the local population; patient navigation and active engagement of family and community members in the care process; multidisciplinary care teams; and targeting multiple leverage points along the patient’s care pathway.
Since a new intervention is unlikely to be perfect the first time it is implemented, the authors emphasise the importance of iterative evaluations and refinements based on performance data.
Moreover, if the task appears daunting, they also suggest tackling just one step or practice in a priority area.
While the other steps are essential to achieve the best results, changes may evolve over time in a dynamic process that eventually leads to more equitable high quality care for all.
• Petra Bywood is Research Manager at PHC RIS.
Chin, M. H., Clarke, A. R., Nocon, R. S., Casey, A. A., Goddu, A. P., Keesecker, N. M., and Cook, S. C. (2012). A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care. J Gen Intern Med, 27(8), 992-1000
The articles above appeared in the 24 January and 14 February editions of the PHC RIS ebulletin, available at http://www.phcris.org.au/publications/ebulletin/index.php.
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