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There’s an old-fashioned idea that the only relationship which matters is the one between the person living with dementia and the medical Doctor. I completely sympathise with the concern surrounding the idea ‘we are all patients now’, where, for example, people experiencing memory problems as a natural part of ageing get overmedicalised as ‘dementia’, perhaps for the purpose of hitting a national target: that well people are in fact the undiagnosed ones. But, likewise, my own experience as a person living with physical disability is that we are all persons who become patients at the point of becoming ill. I therefore think the term ‘patient leader’ is outdated, unless there is a specific group of people who only consider themselves ill.
I am not a ‘believer’ that I belong in an interconnected world by virtue of the fact that I have a Facebook account, but I do feel part of a wider network of knowledge, behaviours and skills. I feel that I can draw on this talent if I need support in me living independently, or care if I have unaddressed needs. When I could barely speak and move, soon after my meningitis, I was helped by a carer who is in fact to this day is one of my best friends. For too long, carers, I feel, have been airbrushed out of the picture. The clue is in the name ‘Whole Person Care’. Carers matter, and they should be given the prestige and status they so strongly deserve.
The landscape is though gradually changing, for the better. The “Triangle of Care” describes a therapeutic relationship between the person with dementia (patient), staff member and carer that promotes safety, supports communication and sustains wellbeing (Carers Trust, 2013). Carers often report that their wish to be effective often compromised by failures in communication, possibly because some people are unwilling listen.
At critical points, carers can be excluded by staff, and requests for helpful information, support and advice are not acted upon. Sadly we need to address the fact that medical professionals need specific training in working with carers, not working against them. This needs to include training in communication strategies with people with dementia, thus enabling people with dementia to be engaged for as long as possible.
redrawn from Carers’ Trust [Triangle of Care]
We currently have a dearth of research of this triangular relationship – but plenty on the ‘dyadic’ relationship between professional and carer. Most studies on patient–physician relationships and communication have focused on the dyadic interaction between the parties and the type of exchanges occurring among them. However, up to 60 percent of medical encounters involving elderly persons are threesomes (Adelman, Greene and Charon, 1987). The features of such relationships differ fundamentally from those of a dyad. The very presence of a third person may affect the basic patient–physician relationship (Kealy and Nolan, 2003) negatively by limiting patients’ involvement and assertiveness or actual exclusion from the care discussions (Greene et al., 1994), or positively by enhancing physician–patient communication and consequently superior comprehension and involvement by accompanied rather than unaccompanied patients (for example Clayman et al., 2005).
A person coming into contact with the health and care services currently do so from the point of a possible diagnosis. Results from the study from Zaketa and Carpenter (2010) were also actively seeking evaluation of their cognition and were subsequently diagnosed relatively early in their disease progression appear to suggest that physicians do not utilise patient-centered behavious such as emotional rapport building at first. Only once patients and caregivers are experiencing and demonstrating overt distress associated with more severe symptoms, or as physicians are delivering more dire news regarding the patient’s prognosis and ability to live independently, does a three-way relationship begin to kick in. Hubbard and colleagues (Hubbard et al., 2009) had concluded that carers are involved in treatment decision-making in cancer care and contribute to the involvement of patients through their actions during, before and after consultations with clinicians. Carers can act as funnels for information from patient to clinician and from clinician to patient. They can also act as facilitators during deliberations, helping patients to consider whether to have treatment or not and which treatment.
And English dementia policy can learn usefully not only from cancer. In paediatrics, De Civita and Dobkin (2009) revisited the term “triadic partnership”, in referring to “the therapeutic triangle in medicine that includes the caregiver, child, and medical team in facilitating adherence to treatment”. Optimal health, one may argue, is achieved when patients, caregivers, and health care providers collaborate in designing a manageable treatment program (Rapoff, 1999). This in time may impact on the policy for self-care. According to Strachan and colleagues, a better understanding of the individual factors that influence heart failure self-care is necessary for interventions to be more responsive to the needs and preferences of patients (Strachan et al., 2013). Individual factors known to affect heart failure self-care are thought to include the individual’s ability to manage comorbid conditions, depression or anxiety, sleep disturbances, age/developmental issues, levels of cognitive function, and health literacy (Riegel et al., 2009). But people are increasingly cognisant of the milieu of the effects of other agents.
The purpose of the analysis by Dalton (2002) is to describe the construction and initial testing of the theory of collaborative decision-making in nursing practice for a triad. The inclusion of a third person (family caregiver) in the theory required the addition of concepts about the caregiver, coalition formation, and nurse and caregiver outcomes. And other groups of patients can also helpfully inform on this debate. Patients themselves are increasingly been seen as critical ‘partners in care’. Hirsch and colleagues have outlined reasons why partners-in-care approaches are important idiopathic Parkinson’s disease, including the need to increase social capital, which deals with issues of trust and the value of social networks in linking members of a community (Hirsch et al., 2013).
I feel the answer comes not through dyads or triads, but by considering whole networks of care for the whole person. As observed elsewhere, although each professional group (e.g. nursing, neurology, physiotherapy) makes its own assessment of the needs of the patient, it appears that it is the integration of the assessment and service delivery that is perceived to be the most useful method to address the health-care needs of these patients (McCabe, Roberts and Firth, 2008). And there’s no doubt for me that this involves effective verbal and non-verbal communication all round.
Primary care visits of patients with dementia of the Alzheimer type (DAT) often involve communication among patients, family caregivers, and primary care physicians (PCPs). The objective of the study by Schmidt and colleagues was to understand the nature of each individual’s verbal participation in these triadic interactions (Schmidt, Lingler and Schulz, 2009). Caregivers of DAT patients and PCPs maintain active, coordinated verbal participation in primary care visits while patients participate less.? Interestingly, the caregivers’ verbal participation in triadic interaction was found to be also related to their reports of satisfaction with the primary care visit, specifically their satisfaction with interpersonal treatment of the patient with DAT by the PCPs. The literature is becoming, however, increasingly vigilant of the cautions in observing patient satisfaction as the outcome for a clinical consultation. In a study from Sakai and Carpenter (2011), videotapes of dementia diagnosis disclosure sessions were reviewed to examine linguistic features of 86 physician–patient–companion triads. Verbal dominance and pronoun use were measured as indications of power. Physicians dominated the conversation, speaking 83% of the total time. Evaluating patient expectations and preferences regarding physician communication style may be the most effective way of promoting patient-centered healthcare communication. To explore and gain further insight into the nature of the triadic interaction among patients, companions and physicians in first-time diagnostic disclosure encounters of Alzheimer’s disease in memory-clinic visits were studied by Karnieli and colleagues (Karnieli-Miller et al., 2012). Twenty-five real-time observations of actual triadic encounters by six different physicians were analysed, The authors found that an effective and empathic management of a triadic communication that avoids unnecessary interruptions and frustrations requires specific communication skills (e.g., explaining the rules and order of the conversation).
This is why feel two’s company, and three’s a very good thing, for English dementia policy. But I feel that wider networks at large are going to be proved to be important for whole person care, though some agents may possibly be more significant than others.
Adelman, R.D., Greene, M.G., Charon, R. (1987) The physician–elderly patient–companion triad in the medical encounter: the development of a conceptual framework and research agenda, The Gerontologist, 27, pp. 729–34.
Carers Trust (2013) The Triangle of Care, Carers Included: A Guide to Best Practice in Mental Health Care in England, Second Edition (812 KB) http://static.carers.org/files/the-triangle-of-care-carers-included-final-6748.pdf
Clayman, M.L., Roter, D., Wissow, L.S., Bandeen-Roche, K. (2005) Autonomy-related behaviors of patient companions and their effect on decision-making activity in geriatric primary care visits, Soc Sci Med, 60, pp. 1583–91.
Dalton, J.M. (2003) Development and testing of the theory of collaborative decision making in nursing practice for triads, J Adv Nurs, Jan, 41(1), pp. 22-33.
De Civita M, Dobkin PL. Pediatric adherence as a multidimensional and dynamic construct, involving a triadic partnership. Pediatr Psychol. 2004 Apr May;29(3):157-69.
Greene, M.G., Majerovitz, S.D., Adelman, R.D., Rizzo, C. (1994) The effects of the presence of a third person on the physician–older patient medical interview, J Am Geriatr Soc, 42, pp. 413–9.
Hirsch, M.A., Sanjak, M., Englert, D., Iyer, S., Quinlan, M.M. (2014) Parkinson patients as partners in care. Parkinsonism Relat Disord. 2014 Jan;20 Suppl 1:S174-9.
Hubbard, G., Illingworth, N., Rowa-Dewar, N., Forbat, L., Kearney, N. (2010) Treatment decision-making in cancer care: the role of the carer. J Clin Nurs. 2010 Jul;19(13 14):2023-31.
Karnieli-Miller, O., Werner, P., Neufeld-Kroszynski, G., Eidelman, S. (2012) Are you talking to me?! An exploration of the triadic physician-patient-companion communication within memory clinics encounters, Patient Educ Couns, Sep, 88(3), pp. 381-90.
Keady, J., Nolan, M. (2003)The dynamics of dementia: working together, working separately, or working alone? In: Nolan MR, Lundh U, Grant G, Keady J, editors. Partnerships in family care: understanding the care-giving career. Buckingham: Open University Press, p. 15–32, 2003.
McCabe, M.P., Roberts, C., Firth, L. (2008) Satisfaction with services among people with progressive neurological illnesses and their carers in Australia, Nurs Health Sci, Sept, 10(3), 209-215.
Rapoff, M. A., Lindsley, C. B., Christophersen, E. R. (1985). Parent perceptions of problems experienced by their children in complying with treatments for juvenile rheumatoid arthritis, Archives of Physical Medicine and Rehabilitation, 66, pp. 427–429.
Riegel, B., Moser, D.K., Anker, S.D., Appel, L.J., Dunbar, S.B., Grady, K.L., Gurvitz, M.Z., Havranek, E.P., Lee, C.S., Lindenfeld, J., Peterson, P.N., Pressler, S.J., Schocken, D.D., Whellan, D.J., American Heart Association Council on Cardiovascular Nursing; American Heart Association Council on Cardiovascular Nursing; American Heart Association Council on Clinical Cardiology; American Heart Association Council on Nutrition, Physical Activity, and Metabolism; American Heart Association Interdisciplinary Council on Quality of Care and Outcomes Research. (2009) State of science: promoting self care in persons with heart failure: a scientific statement from the American Heart Association, Circulation, 120, pp. 1141e63.
Sakai, E.Y., Carpenter, B.D. (2011) Linguistic features of power dynamics in triadic dementia diagnostic conversations. Patient Educ Couns, Nov, 85(2), pp. 295-8.
Schmidt, K.L., Lingler, J.H., Schulz, R. (2009) Verbal communication among Alzheimer’s disease patients, their caregivers, and primary care physicians during primary care office visits, Patient Educ Couns, Nov, 77(2), pp. 197-201.
Strachan, P.H., Currie, K., Harkness, K., Spaling, M., Clark, A.M. (2014) Context matters in heart failure self-care: a qualitative systematic review, J Card Fail, Jun, 20(6), pp. 448 55.
Zaleta, A.K., Carpenter, B.D. (2010) Patient-centered communication during the disclosure of a dementia diagnosis, Am J Alzheimers Dis Other Demen, 25(6), pp. 513 20.
There was a time when the GP used to be at the heart of a person’s community, as well as ‘delivering care’. For some people, there is no such thing as society, and the community consists of high street brands, banks and services (such as police or fire).
I’ve spent some time thinking about the implementation of the ‘dementia friendly community’ policy in a number of jurisdictions. It really has struck me how, for whatever political reasons, nurses are not perceived to be the heart of dementia friendly communities in England.
This, I feel, is a great tragedy. I don’t deny there are about a hundred different causes of a dementia, people’s social circumstances will differ (it is not uncommon for a female widower to develop a dementia while very lonely), cultural differences exist (for example in the rôle of the family in those of an Asian background), there are different rates of progression, and so on.
On receiving a diagnosis, I think support services in dementia should be much stronger than now. What is all too commonplace is a travesty. People don’t know where to turn to for basic information about clinical aspects, or wider aspects about living in the community.
As the dementia progresses, in the later stages, a focus will be to keep the person out of hospital wherever possible. Clearly, support and care in the community need to be funded properly.
A ‘crisis’ for a person living with dementia is where a ‘stressor’ causes that person no longer to be able to cope with living in his or her usual environment. There could be a number of causes of that, but it’s noteworthy that many of them are in fact medical. I disagree a specialist nurse in dementia is necessarily a job for a community psychiatry nurse (“CPN”), as the workload of such nurses tends to be very big.
But seeing a rôle for a CPN is not a trivial one, as I’m a fully signed up devotee of ‘parity of esteem’ where mental health is not seen as the ugly sister of physical health. For that matter, social work practitioners, who often find themselves at the heart of mental capacity decisions and safeguarding issues, should be on an equal footing too with other professionals.
I said to Chris, a friend of mine living well with dementia recently, “GPs will even be in a good position to coordinate information”.
I was in fact repeating words from a GP.
Chris, “So why don’t they?”
In certain respects, in designing a system you wouldn’t wish to start from here.
Without the focus on ‘budgets’ which do not necessarily deliver the ‘right kind’ of choice for the person with the health and care matters, it’s important that people with dementia have rights to a personal care plan, which is responsive to that person’s needs in real time. Knowing someone’s background is particularly essential in people with Alzheimer’s disease where longer term memories may be more intact. Knowing someone as a person is of course at the heart of personhood, through maybe a ‘life story’.
I don’t think it should be a ‘luxury’ of people with dementia following them after diagnosis through the system. I think, in fact, it should be an essential aspiration. It’s really important that somebody can cross off inappropriate medications, such as perhaps antipsychotics, on a drug chart if the person with dementia might not benefit.
It might help if a dementia specialist companion could spot problems in overmedicated people for blood pressure, for example. These individuals might become at risk of falls (and subsequent bone fractures if living with osteoporosis). Or somebody may be developing constipation or a stinging urine, becoming acutely confused. Dementia is not simply caused by conditions of old age, but frail individuals can do particularly bad when coming into contact with hospitals.
In the scenario that a person with dementia at any stage does need to go into hospital, it would help enormously if there could be continuity of care between the community and hospital. People with all types of dementia can find unfamiliarity, in people and environments, extremely mentally distressing, and this can be detrimental to their physical health (taking a whole person care approach). There are few people better than paid carers, with pay above the national minimum wage, and not on zero hour contracts, and unpaid caregivers including friends and family, to inform on these care plans, but the person living with dementia is the one for whom the plan is being designed.
All staff clearly need to be informed and skilled about dementia, and it is vital that resources are put aside for the adequate training of the workforce. The workforce themselves want this.
It won’t be a surprise to you to learn that I see specialist nurses in prime position to offer a huge deal to the implementation of whole person care for dementia from the next Government?
I think my views are broadly consistent with a number of places. A number of reports across jurisdictions have been important in establishing the direction of travel for acute hospital care: e.g. “Dementia care in the acute hospital setting: issues and strategies: a report for Alzheimer’s Australia” (Alzheimer’s Australia, June 2014), “Spotlight on dementia care: a Health Foundation Improvement Report” (Health Foundation, October 2011), and the Royal College of Nursing’s report “Commitment to the care of people with dementia in hospital settings” (RCN, January 2013).
Examples of appropriate clinical leads, as the RCN themselves recognise, are “Admiral nurses” from the charity @DementiaUK, Alzheimer Scotland dementia specialist nurses, dementia champions in Scotland, and ward champions. Merely having ‘dementia advisors’ will be a case of the bland and ill informed leading the bland, on the other hand.
Like many other ‘once in a lifetime opportunities’, if we get this right the service could be vastly improved. I am confident that, if given the proper funding to make this happen, and strong leadership cascades downwards, the next Government will rise to this challenge.
‘Whole person care’ has been done by family doctors for years. We do not need yet more managerial silos.
“No matter how busy you are, you must take time to make the other person feel important.” -Mary Kay Ash
People living with dementia are generally not kept ‘in the loop’ about major decisions in the running of their health and social care services.
Whereas some politicians clearly see some capital in promoting dementia, it is hard to distinguish whether this is a genuine interest in dementia or a need to act as a broker for the pharmaceutical multinationals.
Likewise, ‘whole person care’ has all the makings of a great slogan, raising expectations beyond a reality. The concept is, irrespective of funding mechanisms in various jurisdictions, is that you see beyond a list of clinical diagnoses.
You ‘take notice’ of a person when they’re not ill; this has become a very potent concept with realisation that many people live with conditions but are not symptomatic of any illness. And more than ‘taking notice’, you actively help with issues that can help with wellbeing (such as lifestyle, advice about enforcement of legal rights, good quality housing, access to appropriate benefits, proper design of the environment.)
My working definition of ‘personhood’ is somewhat more basic than that of Carl Jung and Tom Kitwood, whose feet I should never wish to tread on intellectually. But my definition is simply that any person living well is at ease with his or her own past, present and future, and his or her environment including community.
In my view, therefore, it is refutable that there are sources of expertise for whole person care outside the medical profession, including unpaid carers, nurses, occupational therapists, physiotherapists and speech and language t harpists, as well as other persons with dementia.
Health and social care in England currently feels like fragmented different worlds, with a complete lack of communication between them. The lack of continuity of care leads to operational problems in offering health and social care. And if you reduce people to a list of diagnoses, you ignore the past of that person.
For example, a concert pianist might have rather different views about developing rheumatoid disease in his fingers than a building site construction worker has about developing the same disease in his.
What is driving the cost of the NHS budget in England, however, in England is technology not the ageing population; half of England’s current NHS budget goes to people below the age of 65 (Iliffe and Manthorpe, 2014).
There is an important how it could be delivered. An anticipated problem is that how the ‘integrator’ will include services including the private sector as well as possibly community care units; in this rôle the integrator ends up subcontracting services, potentially subverting the original ethos of the CCG process. This is a recipe for fast tracking resources away from the State to the private sector, highly dependent on corporates acting like ‘good citizens’.
Certainly, electronic patient records shared between entities would help.
But there is a temptation, and indeed danger, that ‘whole person care’ becomes a wish list for multinational corporations; e.g. “big is best” and implementation of massive IT projects. Focusing on a person’s beliefs, concerns and expectations, however, has been done successfully for decades by many family doctors, who have been subject to the same principles of regulation over confidentiality and disclosure as relevant to IT systems. By this I mean family doctors who spent ages talking to persons and their families in various environments such as home visits, rather than doctors in modern general practice guillotined by the seven minute time slot.
The current UK Labour opposition is wishing to implement ‘whole person care’ in its next government, and it of course it remains to be seen whether they will be given a mandate for doing so.
But, if so, policy has a delicate balance to run between recognising specialist clinical care in dementia, e.g. through Admiral nurses, in England, and not creating new “silos”, e.g. whole person care nurses in dementia.
Creation of new silos from management and management consultants, apart from all else, encourages insurance-based funding mechanisms for single diseases rather than mechanisms which encourage fair treatment of the whole person in an equitable way.
The strength about the ‘whole person care’ construct is that persons have their physical health, social care and mental health needs considered in the round, with an understanding that comorbities can act both ways: physical illness can cause mental illness, and vice versa.
Whilst it might seem like an experiment in England, and could not have come at a worse time for the NHS with campaigners feeling that changes in health policy are essentially a rouse for backdoor privatisation, the approach of ‘whole person care’ is particularly relevant to dementia, and other jurisdictions, for example California, have already made good progress with it.