Tim is a 55-year-old father of two and lives with his wife Laura, they have been married 34 years. Their daughter Prudence who is 25, has moved back home to help care for her father who was diagnosed with Early Onset Alzheimer’s Disease (EOAD) three years ago. His 30-year-old son lives in the city and travels internationally on a regular basis for work. Prior to his diagnosis, Tim was the head manager for a successful spare parts division of a prominent Toyota dealership, and had begun his own company reconditioning diesel engines for trucks. He was physically active and spent a lot of his spare time making stage props for his wife’s dance studio business. Tim does not smoke, visited the gym occasionally, drank an average of three glasses of wine a night, enjoyed cooking meals for the family, and was very social enjoying a large group of long-term friends from social connections and from work.
Tim lost his job prior to diagnosis because of problems he was experiencing that were caused by his condition. Tim and Laura sold their house and moved into a smaller house to reduce outgoing costs and to put more cash into their retirement fund which they had to now access 13 years earlier than planned. They also decided to fold up the start-up business because Tim’s condition made it impossible to type, write, draw or drive even though he could still recall entire catalogues of spare parts inventories, something that no one in his field could do. The progression of Tim’s EOAD (it manifests idiosyncratically) was that it effected his parietal lobe with some hippocampal damage thus mostly impacting his procedural memory (his episodic and semantic memory are relatively intact). As a result, Tim found it difficult to put on clothes, separate objects that looked the same in colour, read maps and understand the layout of his own home. He could “get lost” moving from one room to another if he was in an unfamiliar environment.
Tim currently spends his time helping his wife around the house, feeding their two dogs and three cats. Tim goes to the gym almost every day with the assistance of a helper supplied by NDIS support who drives Tim to and from the gym and works out with him. Research has shown that the most consistent approach to managing and mitigating the effects of Alzheimer’s is physical activity (Hooghiemstra et al, 2012). Tim believes it is very important to exercise regularly. This is usually lifting weights and playing squash, Tim also takes a 20-minute sauna as often as he can (Laukkanen, Kunutsor, Kauhanen & Laukkanen, 2016). Tim and Laura have adopted the position that there are two options when confronted with a chronic condition such as EOAD; depression, which in all cases leads to an early death, so its not an option at all, or humour, which they both have an abundance of. It is this perspective that they attribute to the success they have had in dealing with the impact of EOAD.
There was very little change to Tim’s lifestyle after diagnosis. Apart from being “mentally disabled”, unemployed and unemployable, it was important to Tim and his wife that they reduced the impact of his condition upon their daily lives. The biggest issue with a chronic condition like EOAD was that depending on a person’s experience with depression and other complications that are attached to such an aggressive form of dementia, those experiencing the condition as stakeholders (the diagnosed, their spouses and in the majority of cases their children), are young comparatively, and can potentially live with the condition over a much longer period with a longer steady decline that impacts stakeholders as continually as it does the diagnosed.
For Laura and Tim, normalcy was key, as was humour. Therefore, behaviours related to diet, exercise and alcohol use were not targeted other than to increase the exercise regime. The decision to follow this path was not due to any medical advice, when Tim received his diagnosis three years ago he paraphrased it as, “we left the doctors office and that was it, there was no information other than, ‘this is what you have and there is no cure, bye’ ”. There were no formal organisations that centred around EOAD, it seemed that late age Alzheimer’s being more common gets all the attention. Pharmacological treatments could only be accessed at later stages of the condition therefore the only approach available to them was cognitive and behavioural. Even here, most of Tim’s behavioural approach came from his own research. The only concrete evidence that was supported by reliable evidence was that cognitive resilience and exercise (which also boosted cognitive resilience) helped mitigate the condition, so that was the health behaviour approach that he followed (Ahlskog, Geda, Graff-Radford & Petersen, 2011; Oswald, Gunzelmann, Rupprecht & Hagen, 2006).
When looking at Tim’s experience through the lens of Azjen’s (1991) theory of planned behaviour (TPB), it is easy to see how the changes were made to Tim’s behaviour and the continuing success of those behaviours through Skinner’s (1953) operant conditioning. Azjen theorised that to enable behaviour change we require an attitude toward the targeted behaviour, an awareness of the subjective norm of the behaviour, in other words, how will the behaviour be received by significant others and the individual’s perceived ability to enact the behaviour, what Bandera (1978) characterised as a person’s self-efficacy. According to Azjen’s model these factors interrelated with each other to produce an intention to change behaviour, however in a later revision of the model Azjen allowed that if a person’s perceived behavioural control (PBC) was strong enough the intention to change could be by-passed and the PBC led straight to the behaviour change.
In making the decision to change some behaviour, it was a simple process for Tim. The positive attitude already existed towards exercise and the research helped to cement this perspective. The prevailing subjective norm is that exercise is always a good thing and coupled with the perceived behavioural control, that Tim believed he had the competency and the will to increase his exercise, intention to change his behaviour and to increase his exercise was reached and thus the behaviour changed. The same process was involved with Tim’s decision to use the sauna as a method to mitigate the impact of EOAD. The research showed evidence of a positive effect (Laukkanen et al, 2016), this amended Tim’s attitude towards sauna and now, following the TPB, Tim uses a sauna almost every day. Operant conditioning explains Tim’s adherence to the behaviour change because these activities produce positive reinforcement for him.
Where we see Tim is unsuccessful in behaviour change is through some dietary behaviours and an exercise protocol and the TPB and operant conditioning explain these. Research had shown there was some benefit for people with EOAD if they increased their ketone levels and reduced simple carbohydrate consumption (Bredesen, 2014, Bredesen et al, 2016). Using a caprylic acid supplement was an easy method of increasing ketones in the system (for a full review see Bredesen 2016) however, too much resulted in severe gastric discomfort. Tim’s condition effected his procedural memory and if the ingestion of caprylic acid is not regular to maintain inoculation against the gastric impact, a gastric episode would result. Unfortunately, Tim experienced a strong negative reinforcement to not take the supplement and his perceived behavioural control was impacted. As a result, Tim is hesitant to increase his use of the supplement.
In another example, research has shown that mitigation of the effects of Alzheimer’s can be achieved through a person’s cognitive resilience, for example those who learned a second language or play a musical instrument in early life or early adult life have developed cognitive resilience and this helps slow down and reduce the impacts of Alzheimer’s and other forms of dementia (Livingston et al, 2017). Creativity coupled with physical activity deepens cognitive reserves, these cognitive reserves or resilience are amassing a body of evidence showing they have a mitigating effect on dementia (Livingston et al, 2017). Alzheimer’s is a multifaceted disease that requires treatment from a range of different avenues from diet to medical/clinical treatment and functional physical activity (Bredesen, 2014, 2016).
To fit with this approach Tim had begun taking Brazilian Jiu Jitsu (BJJ) lessons. The sport requires players to orient their body in space and to adapt and make movement decisions based on position relative to an opponent’s. This requires a “3D” awareness and creativity because players are adopting a variety of positions and stances that occur off the player’s back, standing up, crouching, holding onto an opponent while on top, to their side and underneath. The sport requires each player to counter the opponent’s moves with attacks and defences that involve setups of multiple moves in advance just as in chess. In addition to creative physical activity the sport provides self-esteem, self-efficacy and comradery to people who would benefit from enhancing all these factors. As Tim became more proficient at the skills required to do the sport, his perceived behavioural control increased as did his enjoyment of the sport and the positive reinforcement of increased self-esteem.
A behaviour change that has been the most helpful is Tim’s involvement with the Dementia Australia organisation. Tim’s experience with diagnosis and the lack of organised support pushed Tim and Laura into doing their own research on the subject. At that time a group of people within Dementia Australia also realised there was a gap in how services were provided to those within the EOAD category. Tim is now an advocate for Dementia Australia, he conducts regular group sessions for others who are recently diagnosed with EOAD and involved in the development of government white papers in the field of dementia services. He is also my older brother and I don’t think I have ever seen him with this much purpose. If anything can help mitigate the effects of this condition Tim has discovered it through humour and helping others.
References
Ahlskog, J. E., Geda, Y. E., Graff-Radford, N. R., & Petersen, R. C. (2011). Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging. In Mayo Clinic Proceedings 86(9), pp. 876-884.
Ajzen, I. (1991). The theory of planned behaviour. Organizational Behaviour and Human Decision Processes, 50(2), 179-211.
Bandura, A. (1978). Self-efficacy: Toward a unifying theory of behavioural change. Advances in Behaviour Research and Therapy, 1(4), 139-161.
Bredesen, D. E. (2014). Reversal of cognitive decline: A novel therapeutic program. Aging (Albany NY), 6(9), 707.
Bredesen, D. E., Amos, E. C., Canick, J., Ackerley, M., Raji, C., Fiala, M., & Ahdidan, J. (2016). Reversal of cognitive decline in Alzheimer's disease. Aging (Albany NY), 8(6), 1250.
Hooghiemstra, A. M., Eggermont, L. H., Scheltens, P., van der Flier, W. M., & Scherder, E. J. (2012). Exercise and early-onset Alzheimer’s disease: theoretical considerations. Dementia and geriatric cognitive disorders extra, 2(1), 132-145.
Laukkanen, T., Kunutsor, S., Kauhanen, J., & Laukkanen, J. A. (2016). Sauna bathing is inversely associated with dementia and Alzheimer's disease in middle-aged Finnish men. Age and Ageing, 46(2), 245-249.
Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S. G., Huntley, J., Ames, D., ... & Cooper, C. (2017). Dementia prevention, intervention, and care. The Lancet, 390(10113), 2673-2734.
Oswald, W. D., Gunzelmann, T., Rupprecht, R., & Hagen, B. (2006). Differential effects of single versus combined cognitive and physical training with older adults: the SimA study in a 5-year perspective. European Journal of Ageing, 3(4), 179.
Skinner, B. F. "Science and Human Behaviour", 1953. New York: MacMillan
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