CAROLINE BARTLE says the time is right to campaign for funding to tackle loneliness as a way of moderating risk factors that delay the onset of dementia.
A couple of months ago, Alzheimer’s Disease International (ADI) produced their annual report focusing on risk factors and dementia. The report reflects a shift in research and public policy from cure to prevention. The report takes a life course view, identifying a number of factors over a person’s life that may increase the chances of developing dementia. The ADI report makes for very interesting reading. However, I was disappointed to find that it did not give psychological factors the prominence that it deserves. This may be because of the difficulties researching a subject that has so many complex variables or perhaps the dominance of the medical model in society.
In my social work practice, I observed many individuals develop dementia following a life event, such as the death of a partner or another form of loss, sometimes material or physical. This has always made me curious as to the relationship between how we feel and the onset of dementia. Similarly, in my training and consultancy work, I often feel moved by the powerful impact good emotional care has on an individual’s wellbeing. The impact is far-reaching, often impacting on physical health as well as emotional wellbeing. Many studies reflect this correlation; one study, for example, showed that narrative self-disclosure can significantly improve wound healing (Wienman 2008).
In trying to understand these links, my research has taken me deep into the realms of neuroscience, biology, psychology, and sociology and the complex and fascinating world of psychoneuroimmunology (PNI), a topic well-researched at AUT. I discovered an interesting body of research on loneliness and its impact on wellbeing, and in particular, its relationship with dementia.
Social isolation is used to describe the absence of social contact, whereas loneliness is the dissatisfaction with the quality and/or quantity of social relationships. Loneliness is a subjective experience and may be influenced by a number of other demographic factors. A quality of life survey carried out by Statistics New Zealand in 2010 of over one million people identified a strong relationship between poor economic status and feelings of loneliness in older people. A New Zealand study of 332 people (La Grow & Neville, 2012) found correlations between an individual’s self-reported health and feelings of loneliness. Cultural factors may also influence the prevalence of loneliness.
There is a growing amount of generic research showing that loneliness is harmful to your health. One study claims that loneliness and isolation has a greater impact on mortality rates than obesity (Holt and Lunsted, 2010). Loneliness could also increase the risk of high blood pressure (Hawkley et al, 2010), and has also be linked to more rapid motor decline (Wilson RS et al, 2010).
Similarly, and unsurprisingly, there have also been a number of studies exploring the impact of loneliness on our mental state; individuals who are lonely are more prone to depression (Cacioppo et al, 2006). Depression may be a major risk factor to developing dementia (Byers et al, 2013), and some researchers have hypothesised that depression may even be an early part of the pathology of dementia, while others maintain that the links between loneliness and dementia are independent of depression (Holwerda et al, 2012).
There have also now been a number of studies researching the link between loneliness and dementia. The AMSTEL study (Holwerda et al, 2012) concluded that individuals that have feelings of loneliness have a 64 per cent chance of developing dementia. However, disentangling the complex overlapping issues is difficult. In this research, there are several strands explored:
- Could loneliness be a behavioural reaction to early cognitive decline impacting on our ability to maintain social relations? Social cognition can be impaired early both in Alzheimer’s and Frontal Temporal dementia. This also may be the case in vascular dementia, dependant on where the incident is in the brain.
- Could it be that when someone is living alone, they have less access to social stimulation and sensory engagement, which may lead to physical changes in the brain, reducing cognitive reserve?
- Could it be related to certain personality traits – for example, there are a number of research studies linking neuroticism to increased mortality rates (Huppert 2009)?
- Could there be a more novel neurobiologic mechanism involved?
Prolonged psychological distress will create a physical response along the HPA axis, meaning that distress causes the body to release cortisol, which can lead to a number of physical responses impacting on vascular, immunologic, and metabolic systems. While some studies have found no correlation between cortisol and onset of dementia (Schrijvers et al, 2011), others have linked cortisol to hippocampal damage (Lupien et al 1998) ─ the hippocampus is where our memory is.
Whatever the biological process, psychological distress is not good for wellbeing. However, the level of distress may be mediated in some way with an individual’s personality, specifically one’s ability to be resilient. Resilience is a quality that can be developed. One of the main personality types is neuroticism, and these are individuals who have a tendency to experience negative feelings more and may be less resilient when dealing with emotional distress.
Loneliness exists all over the world and poses significant challenges to the health and social care systems. In New Zealand, more dispersed rural communities may mean that individuals could be living alone in areas that are much harder to reach by services. However, as social isolation and loneliness are not the same thing, this may not necessarily correlate. Similarly, a person may live within a care facility or receive home-based support services and still feel lonely. This highlights that it is the quality not the quantity that service providers need to consider.
The challenge exists for home care providers to think quite broadly about the outcomes of their work; to consider how they are improving not just physical outcomes but also meeting important psychological needs. This needs to be, in part, driven by the infrastructure in place organisationally. A quality infrastructure needs to include perspectives of a range of stakeholders and needs to be implemented from a position of shared vision. Jacobs (2010) found that there is often a disparity between the policy makers and funders and individuals at front line service in the interpretation of government directives. The scope of the assessment process will also either highlight or minimise the importance placed on addressing issues of loneliness. The question has to be asked: how effectively is InterRAI at highlighting these issues?
Addressing feelings of loneliness as a key outcome should not only be the domain of voluntary services such as Age Concern, but also a key responsibility of home-based support services. To achieve this, services need to consider what drives this both on a macro and micro level. On a macro level, what measures can be put in place to convince funders that this is an issue worth funding? On a micro level, it is about enabling the support work to not just be there, but to connect with the person they are supporting. Home-based support services should also have a good understanding of a whole range of approaches so that they might utilise, advocate, and campaign for them – for example, accessible flexible transport, using social media to connect people, assistive technologies that support communication, and befriending schemes.
The time is right to campaign for funding to tackle loneliness as a way of moderating risk factors that delay the onset of dementia. The research is far-reaching and highlights the potential impact of loneliness both on our mental and physical state. Failing to recognise loneliness as a major area for preventative work will have a far-reaching impact economically. Tackling loneliness is going to take a joined-up approach and a shared vision on what government policy is trying to achieve, so that we may reach beyond the rhetoric to the reality.
For individuals currently researching all things dementia, for individuals and family carers living with dementia, and for front line staff, join us on Twitter every Wednesday at 7pm GMT to have a chance to influence research in this area. Look for the #demphd.