Alzheimer's Disease - Navigating the Journey of Care, Identity, and Maintaining Meaningful Activities

Alzheimer's disease (AD) is more than just a medical condition; it's a life-altering journey for 60% to 80% of those grappling with dementia and their families.¹ The growing impact of AD is evident, as it rose to become the 6th most burdensome disease in 2016 and the 7th leading cause of death in the United States by 2021.^2,3

AD is a progressive degenerative disease, which means that the symptoms worsen over time and many of those affected find themselves in retirement homes or psychiatric facilities. This transition from living in their own home to care facilities often results in a significant loss of autonomy and identity, as maintaining privacy and continuing meaningful activities becomes increasingly difficult.⁴ These activities, which are crucial for their quality of life (QoL), include tasks and hobbies that are significant or meaningful to the person's identity and reflect their current or past interests, habits, and routines. When adapted to their abilities, these activities can aid in fostering a sense of connection to the self, others, and the environment. Unfortunately, the progression of AD may limit their participation in such activities, underscoring the critical need for comprehensive care approaches that focus on their well-being and dignity.⁵

Alzheimer’s disease doesn't just affect the individuals diagnosed with it; it profoundly influences their families and friends too. About 75% of the care for those with Alzheimer's is provided by these informal caregivers⁶ - a term that scarcely captures the depth of their role. This responsibility, often taken on by family and friends, comes with a considerable cost. But it's not just about financial burdens; caring for someone with AD can take significant physical and emotional tolls on the caregivers, as they navigate the challenging path of supporting their loved ones with Alzheimer’s.

The Restaurant That Makes Mistakes

"The Restaurant That Makes Mistakes" is a New Zealand television show that sheds light on the capabilities and contributions of individuals with dementia, including Alzheimer's Disease (AD). Featuring eight participants, all diagnosed with some form of dementia, the show is a heartening journey into their world, challenging preconceived notions about the condition.

At the helm of the restaurant is Ben Bayly, a renowned chef and restaurateur, who guides these participants through the daily operations of running a restaurant. The core idea of the show is to demonstrate that people with dementia still have a significant amount to contribute to society and that the label of dementia should not simply strip away their purpose. This is poignantly echoed by participant Bevin who says in the first episode ‘I don’t go around saying “Hello I’m Bevin, I’ve got dementia”’. This statement powerfully encapsulates the essence of the show: dementia should not define a person or overshadow their identity and abilities.

Dementia expert Professor Lynette Tippett conducted a QoL and wellbeing analysis before and after the experiment to gauge its impact on the participants. In the show, these participants are assigned various roles, both in the kitchen and in the front of house, challenging them and showcasing their abilities in a working environment. The first night of the restaurant's operation was exclusively for friends and family, followed by service to paying customers.

Remarkably, all participants who completed the show demonstrated an improvement in their wellbeing scores, including reductions in anxiety and depression. This outcome highlights the positive impact of engagement and purposeful activity for people living with dementia.

"The Restaurant That Makes Mistakes" is not just informative but also deeply emotional. It can be hard to watch, not only because of the challenges faced by the participants, but due to the profound insights it offers into the lives of those with dementia and their families. This show is a powerful reminder of the human spirit and the value each individual brings to the world, regardless of their health challenges.

Importance of maintaining these activities

With no cure for dementia, focusing on quality of life (QoL) becomes essential. Research has shown that maintaining meaningful activities and the ability to perform activities of daily living are important for increasing QoL, and a sense of identity and purpose in life.^5,7 This includes not just cognitive functioning, but also physical strength and mobility.⁷ Maintaining such activities can also prevent and reduce behavioural problems during transitional care (such as from home to care facility).⁵

A notable example of the positive impact of physical activity is evident in a randomised, controlled clinical trial focusing on exercise in dementia patients. Participants who exercised more frequently experienced fewer days of restricted activity, better physical functioning, and reduced depressive symptoms compared to those receiving routine medical care. Over a 24-month follow-up, these improvements in physical activity were maintained and mobility was improved. Remarkably, at the 24-month mark, these participants were less likely to have been institutionalised due to behavioural disturbances.⁸

Engaging in meaningful activities, along with physical activity and cognitive stimulation, has been shown to enhance mood, day-to-day functioning, memory, problem-solving skills, and overall well being. It’s fair to say that "The Restaurant That Makes Mistakes," by providing such an environment for its participants, exemplifies this approach, demonstrating the profound impact that engaging in purposeful and fulfilling activities can have on individuals with dementia.⁷

Challenges in Maintaining Meaningful Activities for Alzheimer's Patients

Maintaining meaningful activities while living with Alzheimer's disease and other forms of dementia can be challenging since it is a progressive condition that often results in the loss of ability to perform certain activities. This difficulty is compounded when caregivers or care facilities are unable to provide appropriate stimulation for such activities. Typically, the transition from home to nursing care leads to a reduction in meaningful activities, such as outdoor exercise or lifestyle-related habits like cooking.

During transitional care, such as when moving from home care to a care facility, crucial information about the person's preferences and habits may inadvertently be lost. Informal caregivers, such as family members, are a particularly important source of information about the patient. Effective communication between these caregivers and health professionals is therefore essential. Changes in interests, cognitive and physical limitations, and the impact of a changing environment can also affect the ability to maintain these activities. Matching activities to a person's current abilities is important to avoid frustration.⁵

Knowledge about the person’s abilities and preferences is crucial in personalising activities. Meaningful activities that may be beneficial to people with dementia should resemble activities they once enjoyed, with adaptations to their current needs. They should also promote an overall positive experience by boosting their self-esteem by achieving a task independently and providing the opportunity for social interaction. These activities should be somewhat relaxing and avoid new or overly complicated tasks.^5,9

Understanding the motivation behind the patient's interest in an activity is also crucial. Adapting to a new environment might change the meaningfulness of an activity. For instance, cooking in a communal kitchen might not hold the same meaning as cooking in their own home.

For individuals with AD, the ability to continue regular activities can vary significantly. Some may manage to maintain their usual routines with a bit of assistance, while others find it considerably more challenging due to physical or cognitive difficulties. In these cases, advancements in AI technology offer a promising solution. AI, such as virtual reality, can create experiences that closely mimic their favourite activities, allowing individuals to engage in these pastimes without the physical demands they may no longer be able to meet. This innovative approach shows how AI is progressively shaping the treatment and care strategies for AD, offering new ways to enhance the quality of life for those affected. For an in-depth look at how technology is shaping AD treatment, you can read our article here: https://www.rxcomms.com/blog/revolution-in-alzheimers-diagnosis-and-patient-care

As “The Restaurant That Makes Mistakes” indicates, maintaining meaningful activities is incredibly important for improving the quality of life for people diagnosed with dementia. Stimulating activities can improve the person’s overall mental health and wellbeing. If there’s one thing you take away from this article, let it be this: enjoyment doesn’t require memory. Just because a person with dementia may not remember an activity tomorrow or a few days from now doesn’t mean that they won’t benefit from it.

References:

1. Alzheimer’s Association. What is Alzheimer’s disease? Accessed December 6, 2023. Available at: https://www.alz.org/alzheimers-dementia/what-is-alzheimers
2. 2023 Alzheimer's disease facts and figures. Alzheimers Dement. 2023;19(4):1598-1695. doi:10.1002/alz.13016
3. US Burden of Disease Collaborators, Mokdad AH, Ballestros K, et al. The State of US Health, 1990-2016: Burden of Diseases, Injuries, and Risk Factors Among US States. JAMA. 2018;319(14):1444-1472. doi:10.1001/jama.2018.0158
4. Long C, Mclean A, Boothby A, Hollin C. Factors associated with quality of life in a cohort of forensic psychiatric in-patients. The British J. Forensic Pract. 2008;10(1):4–11. doi.org/10.1108/14636646200800002
5. Groenendaal M, Smaling HJA, Achterberg WP, Caljouw MAA. Maintaining meaningful activities for persons with dementia during transitions of care: A systematic review. Geriatr Nurs. 2022;44:176-183. doi:10.1016/j.gerinurse.2022.01.017
6. Deb A, Thornton JD, Sambamoorthi U, Innes K. Direct and indirect cost of managing Alzheimer's disease and related dementias in the United States. Expert Rev Pharmacoecon Outcomes Res. 2017;17(2):189-202. doi:10.1080/14737167.2017.1313118
7. Logsdon RG, McCurry SM, Teri L. Evidence-Based Interventions to Improve Quality of Life for Individuals with Dementia. Alzheimers care today. 2007;8(4):309-318.
8. Teri L, Gibbons LE, McCurry SM, et al. Exercise plus behavioral management in patients with Alzheimer disease: a randomized controlled trial. JAMA. 2003;290(15):2015-2022. doi:10.1001/jama.290.15.2015
9. Alzheimer’s Association. Activities. Accessed December 6, 2023. Available at: https://www.alz.org/help-support/caregiving/daily-care/activities