top of page

ABSTRACT

Dementia is a term used to describe a group of symptoms affecting thinking, memory and social abilities severely enough to interfere daily life. It isn’t a specific disease, but several diseases can cause dementia. This written work explains the research, concept, rationale and design process on the key topic ‘Dementia’, observing the awareness among the young adults and raise the awareness. The research methodology used in this project was primary research — online survey, interview, self-experimentation and secondary research — articles, medical blogs, used by the researcher to carry out the design decisions and rationale. The wider context focuses on the stages of dementia, young-onset dementia and the possible type of dementia for young-onset dementia; whereas the specific context highlights the objectives, the target audience, the research of the feeling of having dementia, the analysis of gathered data and the inspirations. The researcher’s data visualisation piece extracts general view and personal view of young adults on dementia. Aside from allowing people to understand through data visualisation, the researcher has created the envisioned information piece in the form of medical record folder and acrylic-vinyl record album. Both pieces are interrelated with each other as they stem from the same objective and topic. It has a running theme for both pieces which is the evidence of existence while the concept is stages/phases. The description of practices and process employed by the researcher in this project to adhere the art direction of the project. The project consists of two theories underpinned to create an emotional relation with the audience which are designated to have their own interpretations after knowing the conveyed message from the envisioned information piece. The subsequent paragraphs will go more in depth about them.

WIDER CONTEXT

Stages of Dementia

The timeline for the stages of dementia varies from individual to individual. A doctor will never tell an individual or a caregiver when exactly to expect the next progression of the disease. Life expectancy for dementia individuals is also very different. No two individuals are exactly alike and there have been cases of individuals being diagnosed with more than one form of dementia. The following is a summary of the seven stages of dementia, according to the model created by Dr Reisberg (Villages of Windcrest, 2019)

 

  1. No Memory Deficit

  2. Slight Cognitive Decline

  3. Mild Cognitive Impairment

  4. Moderate Cognitive Decline

  5. Moderate Dementia

  6. Severe Cognitive Decline

  7. Severe Dementia

 

Young-Onset Dementia

Dementia doesn’t just happen to older people. While age is still the biggest risk factor for dementia, people in their 50s and 40s (and even 30s and 20s) can also develop dementia and it’s called as young onset dementia. The causes of young-onset dementia are similar to the diseases that usually cause dementia in older people (Alzheimer Society, n.d.). However, some causes, such as frontotemporal dementia (FTD), are more common in younger people. Dementia in younger people often has different symptoms, even when it’s caused by the same diseases as in older people. Besides, Alzheimer’s disease (AD) is the most common type of young-onset dementia and may affect around 1 in 3 younger people with dementia. (Alzheimer's Society, n.d.)

 

Frontotemporal Dementia

Frontotemporal dementia is caused by damage to the lobes at the front and/or sides of the brain. It is much more common in younger people with dementia than in older people. FTD is most often diagnosed in people between the ages of 45 and 65. This is different to Alzheimer’s disease, vascular dementia and dementia with Lewy bodies, which all become more likely as people get older. There are three different types of FTD which cause different changes as the first symptoms which are behavioural variant FTD (changes in personality and behaviour), progressive non-fluent aphasia (changes in language production) and semantic dementia (changes in language comprehension). (Alzheimer's Society, n.d.)

SPECIFIC CONTEXT

As dementia commonly affects older adults, young adults might not aware or have any knowledge about this, but the chance of having dementia to older adults can be lessen if more young adults are aware of dementia to prevent their elderly suffer from it.

​

Futhermore, people with dementia often experience changes in their emotional responses. They may have less control over their feelings and how to express them. For example, someone may overreact to things, have rapid mood changes or feel irritable. They may also appear unusually distant or uninterested in things. (Alzheimer's Society, n.d.) They also can feel confused when they get something wrong they may feel annoyed and angry. They may not know they are upset and can’t describe why they feel like that. On the other hand, the person with dementia may also develop feelings of loss and grief as their condition progresses. These feelings might vary as their awareness of their condition comes and goes. They may grieve for the loss of their abilities, skills and independence and worry about what’s going to happen in the future. As their environment becomes unfamiliar and more confusing, they can feel more isolated. This can be difficult for the person to cope with, but there are things the others can do to support them. (Alzheimer's Society, n.d.)

​

An online survey was conducted to further research on the awareness among young adults, the data of their fear based on different signs and symptoms of dementia and their description of their feelings if having 5 different signs and symptoms of dementia which are amnesia, aphasia, mood swing, sudden change in ownself behaviour or personality and mixed symptoms. The survey had received a total of 30 responses. By analysing the survey answers, only 6 of them are aware of dementia, 17 of them believe dementia is equivalent to Alzheimer’s Disease, 18 of their elderly tend to forgot recent events or information and 16 of their elderly tend to repeat their words often. The descending arrangement of their greatest fear to least fear signs and symptoms of dementia starting from mixed symptoms, amnesia, aphasia, sudden change in behaviour or personality and mood swing. Besides, when it comes to their description of their feelings if having 5 types of different signs and symptoms of dementia mentioned above, the most answered words or phase described are helpless, anxious and hollowness. In addition, an Instagram story questioned about the feelings and thoughts about severe memory loss and lost ability of communicating were posted to gain more insights. 

​

The main inspiration of this project is from musical representation of dementia/amnesia album ‘Everywhere at the End of Time’ and ‘An Empty Bliss Beyond This World’ by The Caretaker also known as James Leyland Kirby. These albums consist stages of identifying, experiencing, and accepting the fact that the patient memory is slowly peeling away before their very eyes. (Shahid, 2021) It also inspired from an American figurative artist who became known posthumously for his self-portraits created after his diagnosis of Alzheimer's disease (AD) in 1995—William Charles Utermohlen.

 

 

 

 

​
 

THE WORK

The project titled ‘Dementia in Young Adults View’ is a data visualisation infographic showing the observation of awareness among young adults and their level of fear based on dementia symptoms. The data gathered and analyzed from 30 young adult respondents based on their knowledge and insights regarding the topic. The main subject of the infographic is a silhouette of a person with a spiral design in it, the original subject is William Charles Utermohlen, an American figurative artist who became known posthumously for his self-portraits created after his diagnosis of Alzheimer's disease (AD) in 1995, surrounded by 5 eyes looking towards the subject which relates back to the project title ‘Dementia in Young Adults View. The spiral design indicates the general data such as the awareness of dementia, the relevance with Alzheimer’s disease and the relation to aging process; the 5 eyes indicate the level of personal fear from 5 different signs and symptoms of dementia.

​

The envisioned information piece titled ‘Patient Journal: Young-Onset Dementia’ and ‘Bliss of the Halcyon Days are Over’, are interrelated with each other as they stem from the same objective and topic. It has a running theme for both pieces which is the evidence of existence while the concept is stages/phases. ‘Patient Journal: Young-Onset Dementia’ is a medical record folder compiled with the analysis of a young-onset dementia patient based on his journal, his original journal copy and additional research based on the topic; ‘Bliss of the Halcyon Days are Over’ is a 12 inch acrylic-vinyl record album which consists two records/discs that summarized the stages of dementia gone through by the patient. The visuals of the engraved acrylic records show the mentality transition of the patient from Disc 1 to Disc 2 based on the album tracks. The purpose of the envisioned information piece is to let the audience feel the feelings or create a resonance of having dementia from a young adult journal as it can be more related to the targeted audience in terms of age group. 

​

A sense of nostalgia is the art direction applied in this project, items such as a secondary school Gapen book and, vinyl record, policy document split pin are used; processes such as stained paper, burned paper, image transfer are applied to create the texture of aged or used. The idea of ‘Patient Journal: Young-Onset Dementia’ origin from manila card folder, a folder frequently used by secondary school student for Geographic or Sejarah project purposes, and the papers inside usually crumble around the edges. 

​

The present the pieces, the two acrylic-vinyl records from ‘Bliss of the Halcyon Days are Over’ where placed on acrylic plate display stands on the left and right of the table. The album jacket was placed infront of the records to the audience look through the artwork and title tracks. The medical folder, ‘Patient Journal: Young-Onset Dementia’ was placed right beside the album jacket to let the audience to flip through. 

 

 

 

​
 

THE PRACTICE

The theory of Kubler-Ross 5 Stages of Grief was applied while constructing the journal storyline of the patient. The 5 Stages of Grief is a theory developed by psychiatrist Elisabeth Kübler-Ross and the 5 stages are denial, anger, bargaining, depression and acceptance. The grief cycle model is a useful perspective for understanding our own and other people’s emotional reaction to personal trauma and change, irrespective of the cause. The model was originally developed to explain the experience of those dying from terminal illness. It is now also widely used to explain the process of grief more broadly. From this model’s perspective, it is important to note that grief is not a linear process. Grief is considered to be fluid and as a result it is believed that most people do not progress through the stages of this model in an orderly manner (Baxter & Diehl, 1998). 

 

For example, the journal starts from the patient being denial after being diagnosed transitioned to anger because of confusing on his uncontrollable behaviour in the public. And then being depressed when he assumed his condition can’t be cured other than slows the progression, completely overwhelmed by a sense of hopelessness. Eventually, acceptance of his condition, believe the people who loved him and believe his condition can be cured. The patient is also bargaining to have more time with his family and friends, to live like the days before dementia, he even wrote a reminder page for himself to remember the people who he loves and cares for him. It also applies to the audience who read through the journal pages or glimpse through the track titles as it is designated to trigger the feeling of grief, to create an emotional resonance, to let the audience feel the feeling of having dementia and the different stages of it. 

​

Furthermore, as the theme of the envisioned information piece is evidence of existence, it is crucial to create a sense of nostalgia. Nostalgia arises from tender and yearnful reflection on meaningful life events or important persons from one’s past. The core components of nostalgia are self-reflection, autobiographical memory, emotional regulation and reward. (Yang et al., 2022) It isn’t just a happy trip down memory lane — in fact, nostalgic reflection often involves both negative and positive emotional states. Critically, it tends to follow a redemptive sequence in which negative feelings such as longing and loss give way to positive feelings such as happiness, social connectedness, gratitude, and hope. In other words, nostalgia is bittersweet, but more sweet than bitter. (Routledge, 2021) Nostalgia is also used in marketing to connect the brand with positive concepts or ideas from past. The goal is to associate the brand with the feelings of comfort and security.

 

In this project, the nostalgia of emotional regulation was applied while constructing the journal storyline of the patient, where the patient wrote a reminder for himself about who to remember; the nostalgia of reward was applied while produce the pieces, to attract the audience by the look of the pieces—something old, vintage and aged, something they had seen before, like the feeling of flipping through an old photo album. Thus, ‘Patient Journal: Young-Onset Dementia’ originated from a written Gapen book which is often used in secondary school. It was “packaged” in a document folder which replicates the manila card document folder that were also often used in secondary school. The folder was coffee stained and the content pages were burned or tea stained to make it look old, aged or well used. Besides, the initiative of producing a vinyl record album was to simplify the context to track titles which describe dementia stages across the journal. The album cover art and the acrylic-vinyl records of ‘Bliss of the Halcyon Days are Over’ was designed to let the audience have their own interpretation of the feeling of having dementia and the patient’s feeling through the visual representation.

​

​

​

​

​

​

REFERENCES

Alzheimer's Society. (n.d.). Feelings after a diagnosis and as dementia progresses. Alzheimer's Society. https://www.alzheimers.org.uk/get-support/help-dementia-care/feelings-after-diagnosis-dementia

 

Alzheimer's Society. (n.d.). The psychological and emotional impact of dementia. Alzheimer's Society. https://www.alzheimers.org.uk/get-support/help-dementia-care/understanding-supporting-person-dementia-psychological-emotional-impact

 

Alzheimer's Society. (n.d.). What causes young-onset dementia? What causes young-onset dementia? Alzheimer's Society. https://www.alzheimers.org.uk/about-dementia/types-dementia/what-causes-young-onset-dementia

 

Alzheimer Society. (n.d.). Young onset dementia. Alzheimer Society. https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia

 

Baxter, E. A., & Diehl, S. (1998). Emotional stages: Consumers and family members recovering from the trauma of mental illness. Psychiatric Rehabilitation Journal, 21(4), 349–355. https://doi.org/10.1037/h0095289

 

Routledge, C. (2021, April 26). The Surprising Power of Nostalgia at Work. Harvard Business Review. https://hbr.org/2021/04/the-surprising-power-of-nostalgia-at-work

 

Shahid, R. (2021, January 28). Music Analysis: “Everywhere at the End of Time” by The Caretaker. The Washingteenian. https://thewashingteenian.wordpress.com/2021/01/28/music-analysis-everywhere-at-the-end-of-time-by-the-caretaker/

 

Villages of Windcrest. (2019, September 10). How to Identify the 7 Stages of Dementia. Villages of Windcrest. https://www.villageswindcrest.com/blog/how-to-identify-the-7-stages-of-dementia/

 

Yang, Z., Wildschut, T., Izuma, K., Gu, R., Luo, Y. L. L., Chai, H. J., & Sedikides, C. (2022). Patterns of brain activity associated with nostalgia: a social-cognitive neuroscience perspective. Social Cognitive and Affective Neuroscience, nsac036. https://doi.org/https://doi.org/10.1093/scan/nsac036

bottom of page