Almost like a ‘blind spot’ in English dementia policy is the effect of the benefits system on the wellbeing of people trying to live better with dementia and their closest ones who find themselves often being thrust into the rôle of unpaid family caregiver.
It is anticipated that there will be news of ‘ICHOM’ soon. ICHOM is the International Consortium of Health Outcomes, and will provided a much needed ‘better value’ focus on the delivery of healthcare and living better with dementia.
ICHOM bring together working groups, made up of clinicians, methodologists and outcomes experts, registry leaders, persons with conditions and their carers, social workers and allied health professionals – the multi-disciplinary team involved in the entire care cycle.
The language in policy of ‘productivity’ and ‘efficiency’ often are not the most appropriate in weighing up how good dementia care, unless one is considering the throughput of flow of the acute hospital admission possibly.
There have been some inroads into thinking about ‘unplanned hospital admissions’. Here there is a policy sensitivity in not wishing to frame the hospital admission as a ‘failure’.
The King’s Fund in a document called ‘Better value in the NHS’ helpfully identified a number of important factors which could be addressed.
There is evidence that the following interventions can help reduce unplanned admissions in the following selected patient populations: namely, for example, specialist clinics, education and self management, rehabilitation, care home liaison, care coordination, telemedicine and preventive health checks.
It is evident that there are key areas for improvement efforts: such as prevention of falls in the community, reducing admissions for ‘ambulatory care sensitive conditions’ such as COPD, urinary tract infections or pneumonia, tackling problematic polypharmacy, and reducing admissions from care homes.
The aim of ICHOM is to bring together working groups, made up of clinicians, methodologists and outcomes experts, registry leaders, persons with conditions and their carers, social workers and allied health professionals – the multi-disciplinary team involved in the entire care cycle.
This appears consistent with plans for the ICHOM ‘draft wheel’, which embraces a number of important areas potentially: neuro-psychiatric – includes anxiety, depression, behaviour, apathy, psychosis; cognitive – includes memory, orientation, verbal fluency and executive function; social – includes community affairs and relationships; daily living – includes activities of daily living, sleeping and eating; overall quality of life and wellbeing – includes autonomy, finance, enjoyment of activities, pain, dementia knowledge and understanding and life as a whole, communication; carer aspects – includes quality of life, carer depression; falls; clinical progression including events such as confusion or delirium; and medication.
It would clearly be helpful if ICHOM does not operate in a ‘silo of its own’ in policy circles; and some effort is made to harmonise ICHOM with the social determinants of health (such as education, housing or transport), or dementia friendly communities/age friendly cities.
I am loathed to use the term ‘burden’ in relation to the carers, not because I do not want to airbrush out ill being, but out of respect for the intensely rewarding nature of caring for many. But there is no doubt that there are numerous factors which can cause strain on the carer, such as physical and mental health, or financial affairs, for example.
Some time ago, the Barker Commission from the King’s Fund reported on a ‘new settlement’ for health and social care. The Commission argued for much greater alignment between health and social care.
Critically the Barker Commission identified the Attendance Allowance as being a key benefit in the health and social care system: “It is paid to those who need frequent help or constant supervision, and the eligibility criteria for it have marked similarities to those for social care – ie, the need for support in activities of daily living such as preparing food, eating, washing, dressing, going to the toilet and medicines compliance, and whether someone is a risk to themselves or others.”
In March 2015, some infrequent research was published on the ‘quality’ of primary care and unplanned hospital admissions. This paper by Panagiotis Kasteridis and colleagues was especially helpful as it threw some helpful light on dementia:
“This research adds to the sparse literature on the relationship between primary and secondary care for dementia patients and in particular on the ‘protective’ effect of higher quality primary care (as measured by the QOF) on emergency hospital admissions. Whilst this association does not necessarily imply the relationship is causal, we have made efforts to ensure the robustness of our methods and undertaken extensive sensitivity analyses to demonstrate our associations are qualitatively consistent. Our study quantifies the relationship using panel data to account for potential confounding effects, and is the first to explore the impact of under-diagnosis on the relationship between quality of primary care and hospital admissions. Another novel finding is that a social benefit, Attendance Allowance, was consistently associated with lower unplanned admissions (typically by around 2%) in practices where a higher proportion older people were living in income deprivation. Efforts to remove barriers to accessing social support could therefore be targeted towards these disadvantaged groups, and policy makers may also wish to investigate the level of benefit needed to prevent admissions. However, further research is needed to verify these findings and to guide policy.”
Whilst the overall tendency has to been to try to construct the narrative in ‘cost neutral’ terms if possible, in other words ideally getting a dementia friendly community without substantial financial investment, it is clear that money injected strategically into parts of the system will have a direct effect on the wellbeing of persons with dementia and carers. The rôle of the benefits system is one such area, and it would be timely of ICHOM to acknowledge their importance somehow.