Most of the participants were aged between 80 and 89 years (80.5%) and female (83.3%). The HDS-R scores of the participants were ranged from 9 to 14 (36.1%) and 15–20 (63.9%). Adult day service was used by most of the respondents (83.3%). This study explored everyday wishes expressed by the PLwD. From the qualitative data analysis of interviews, 168 primary codes emerged. The study findings were organized under five themes: desire of being connected, freedom to decide, involvement in activities, status quo, and self-reliance.
Desire of being connected
The participants described the theme ‘desire of being connected’ from two perspectives: (1) the importance of living with family (2) attachment with family and friends. The desire of being connected in everyday life was stated as the most important wish by all participants.
All the non-institutionalized PLwD who participated in this study lived with their family. Most of the participants lived with their spouses. Some participants stayed with their son/ daughter, and few had extended families where they lived with their spouses, children, and grandchildren. Some participants lived alone but moved to stay with their children after they were diagnosed with dementia. The participants talked about the importance of living with their families. Participants informed that they had people to look after them and talked about the help that family members did. They recognized the importance of this assistance in getting through everyday life. Many also stated that their everyday lives would have worsened if they were living alone. Participants acknowledged the importance of living with the family and wished to live so under any circumstances.
A strong connection with family was highlighted as the most desirable thing for their emotional happiness. Participants stated that living with the family will be more useful when they are connected with other members of the family. Presence, mutual conversation, do something together were considered as the connection. Besides family, connection with friends was considered a vital everyday wish among participants. Participants who were relocated to a new place and could not visit friends missed their friends who used to live close by. The PLwD included in our study had a fear of being alone. They often felt unhappy when they were unaccompanied. Participants reported being negatively affected emotionally when they experienced loneliness. The essence of the findings was that the participants wanted to be accompanied by their family or friends.
“Sometimes I live alone during the day, and my son/daughter-in-law brings dinner for me in the evening. I feel good to see them, but I feel bad when they are not with me during the day”. (Female: Age: 82)
The study findings revealed that participants enjoy seeing family members and friends around them. Subsequently, participating in any discussion on any topic with family and friends makes them happy. They also like to have outings and parties with their beloved family and friends.
“It’s fun to spend time with friends … Talking to family members is one of my pleasures. I feel happy watching TV together.” (Female, Age: 85)
Freedom to decide
The majority of participants mentioned that they were not allowed to make decisions about their daily activities, such as where and with whom to visit and their participation in social activities. The majority of the participants talked about how much they used to enjoy outdoor activities like karaoke parties, sports events, and regular shopping. They felt that their lives were being dwindled because family members were restricting and controlling their activities.
“I used to go to the stadium with my friends to watch baseball matches. I want to go there, but my wife will not let me go”. (Male, Age: 83)
Many participants said that, in many cases, different people prevented them from having any choice or control over what they wanted to do daily. Some participants found being questioned by family members unpleasant.
“I used to exercise; I believe that I can stay healthy by doing regular exercise. But my family members tell me that I make much noise when I exercise at home, and then I quit exercise.” (Male, Age: 81)
Some also mentioned that it was difficult for them to find out what could give them pleasure because they could not do anything as per their wishes; instead, they had to follow others’ instructions.
Participants indicated a wish for more freedom in their daily lives. Having freedom meant having control over their daily schedule and activities in daily life. Many participants, for example, requested more control over having a say in when and how they participate in preferred activities, such as attending a baseball game, going shopping, or going on a day trip, even if they had to depend on others for transportation or other support. The wish to live comfortably without interference was found universal among participants. The decision-making power at home and outside about anything related to them was commonly desired.
“I want to spend the day without others’ (family, friends, the staff at the care center) interference.” (Male, Age: 87)
Involvement in activities
Participants talked about the importance of being involved in any activity and stated their chosen activities. Spending a day without doing anything could be emotionally painful for many participants. PLwD participated in our study hoped to continue enjoying activities and remaining socially engaged.
“Being lazy at home is not good, so I want to do something.” (Female, Age: 76)
Most of the participants stated a wish to enjoy the present time. They talked about activities they wanted to carry forward for having an enjoyable time. The preferences regarding enjoyable activities differ among Participants. Most participants expressed a desire to have a daily routine and wish to involve with something pleasant regularly, like going to a daycare center, gardening, taking a walk, playing a game, visiting different places, etc. Our study revealed that a few participants enjoyed the companion of pets. It was mentioned that the amount of effort and time required to take care of the pet made them busy. Spending time with pets also helped them combat loneliness. A few respondents expressed that taking care of pets became a part of their daily routine, which they enjoyed.
“I’m busy and happy now because I have two cats.” (Female, Age: 87)
It was also found that some participants, on some days, did not have anything to do; however, they did not feel depressed or bored because they had pets.
“On days when there is no day service, I walk and play with my dog.” (Female, Age: 81)
Many participants also wanted to have the opportunity to learn new things. They believed that it would keep them physically active and give them peace. Additionally, respondents desired to be involved in activities that would improve their condition.
“At the day service, I am doing functional training and also doing yoga. I am not bored because I have something to do.” (Female, Age: 81)
Despite the eagerness to learn new things, a few participants mentioned their fears due to their age and condition.
“I wanted to learn the internet at the age of 75, but I know it’s quite difficult.” (Female, Age: 75)
A status quo bias is an emotional effect that makes the participants worried that something might be lost due to change. Participants focused on having everyday life run as usual. Their habits, routines, and familiar environment were crucial to them, and they wanted to keep them unchanged.
Participants expressed their wish to live their everyday lives in the same way and do similar activities as before they were diagnosed with dementia. By doing similar activities, they wish to continue living with the same sense of self as before.
“It’s good to keep the same rhythm of life as before.” (Male, Age: 82).
Many of the participants were against any changes in their living environment. Furthermore, it was stated difficult for them to adapt to the new environment. Several participants expressed their disappointment as they lost contact with friends and helpful staff due to the relocation of the day service center.
“The day service I used to go to is closed, so I have to shift to a new service center. It seems too stressful to me. I like the place and staff working there.” (Female, Age: 82)
Some participants moved to other places to live with their children after being diagnosed with dementia. Such changes made their lives emotionally painful as it was difficult for them to cope with unfamiliar places.
The idea of self-reliance was strong among the participants. Many of them stated that they would prefer to die instead of becoming troublesome. The participants also wanted to live on their own without being a burden to others.
“I want to be myself, and I want to die without bothering others.” (Female, Age: 85)
Participants believed they were dependent on others to do various home jobs and everyday activities, including personal care. Several respondents desired to manage everything independently as much as possible, including taking care of themselves and not asking for too much help. Many participants also considered the caregivers, especially their spouses’ current health conditions. It was difficult for the participants to receive assistance from someone in poor health. They want to do their own things of daily livings so that they do not put too much pressure on their spouses.
“My husband is old. He is ill too. I can go to the bathroom by myself, and I am grateful that I can walk.” (Female, Age: 86)
Participants expressed that if they become a burden on their family and require assistance in every aspect of their daily lives, that could create conflict between them and their family when they differ in their preferences for activity which will eventually force them to follow the instruction of family members. In a few cases, participants wished to be financially independent to reduce the financial burden on the family. “I want to do something to earn some money; I want to keep money with me all the time” (Female, Age: 75). Having the sense that they could do things correctly was also crucial to the participants.
“I appreciate that I can look after myself even if it is the minimum.” (Male, Age: 80)