Older Adults Recently Diagnosed with Age-Related Vision Loss: Readjusting to Everyday Life

Abstract

This study aims to explore how older adults recently diagnosed with age-related vision loss experience and readjust to their new everyday lives. Ten individuals participated in qualitative interviews. Using a grounded theory analyzing strategy, the core category identified was named “Good days—an everyday life with small and wide-ranging adjustments,” including three categories: (1) Not as usual or as planned; (2) Holding on to important activities; and (3) Holding on to independence. Although participants navigated new challenges, they also expressed a fear of more extensive vision loss that would threaten additional losses of activity and independence. The article concludes with recommendations for practice.

KEYWORDS:

• vision loss
• older adults
• everyday life
• readjust
• qualitative interview

INTRODUCTION

Within the growing population of older adults worldwide, the most common causes of disability are not only dementia, hearing loss, and osteoarthritis, but also vision loss (World Health Organization, 2012). Although the number of older adults living with age-related vision loss continues to increase, diseases such as macular degeneration, glaucoma, cataracts, and diabetic retinopathy are often overlooked (Crews & Campbell, 2004; Horowitz, 2004). Research nevertheless indicates how older adults experiencing impairment due to vision loss are at risk of and often have to cope with other health problems, the sum of which often involves a quality of life inferior to that of other older adults (Burmedi, Becker, Heyl, Wahl, & Himmelsbach, 2002; Crews & Campbell, 2004; Esteban et al., 2008; Harada et al., 2008; Horowitz, 2004; Renaud et al., 2010; Szabo, Janssen, Khan, Potter, & Lord, 2008). Since vision loss tends to influence opportunities for managing everyday life and participating in society (Alma et al., 2011; Berger, 2009Berger, 2011; Brennan et al., 2001; Dahlin–Ivanoff, Sonn, Lundgren–Lindqvist, Sjöstrand, & Steen, 2000; Desrosiers et al., 2009; Eklund & Dahlin-Ivanoff, 2006; Gallagher, Hart, O’Brien, Stevenson, & Jackson, 2011; Lee & Brennan, 2006; Laliberte Rudman & Durdle 2008; Laliberte Rudman et al., 2010), it is vital that older adults receive health care services after they have been diagnosed. However, thorough knowledge of how individuals readjust to vision loss remains scant, particularly regarding the period immediately after diagnosis and before any intervention programs are offered. Yet, such knowledge is crucial to developing intervention programs for the growing population of older adults living in local communities. In response, the aim of this article is to explore how older adults newly diagnosed with age-related vision loss experience and readjust to the new challenges of everyday living.

Everyday Life with Vision Loss

As defined in our study, everyday life consists of activities that people do out of either necessity or desire. Impairments due to vision loss can make these activities difficult to perform. Research focusing on older adults with vision loss in general, shows how everyday life activities involve new challenges and also how the individual over time in different ways readjusts to everyday life. For example, Lamoureux, Hassell, and Keeffe (2004) found that these individuals perform less-demanding activities of household work and personal care, yet remain involved in socializing with family, friends, and neighbors. Compared to persons without low vision, these individuals are more likely to face difficulties with performing household activities, particularly those involving walking inside their houses and climbing stairs, as well as with doing heavy housework and preparing meals (Crews & Campbell, 2004; Horowitz, 2004). They may also be more dependent on help from others in executing the activities of daily life, such as taking care of their appearance or feeding themselves (Travis, Boerner, Reinhardt, & Horowitz, 2004). In addition, many of these individuals experience limitations in taking care of instrumental activities of daily living, or IADL (Dahlin–Ivanoff et al., 2000), which involve more complex functioning and tasks that demand better vision (Berger & Porell, 2008). In a qualitative study investigating the activity of reading for leisure and how to cope with IADL due to age-related vision loss, Ryan, Anas, Beamer, and Bajorek (2003) found that the elderly considered reading to be as important after vision loss as it was before. In fact, despite barriers, reading continued to be an important activity, both for pleasure and for managing IADL such as preparing meals, using the telephone, and managing household finances.

Outdoor activity can also become a challenge among individuals with vision loss (Berger, 2009; Gallagher et al., 2011; Heyl & Wahl, 2001; Lamoureux et al., 2004; Ryan et al., 2003; Wang, Mitchell, Smith, Cumming, & Attebo, 1999). As Burmedi et al. (2002) found, older adults with low vision experience loneliness amid changes in social functioning and social support. Lamoureux et al. (2004) furthermore indicated that relatively few individuals in the elderly population with vision loss leave home for recreational activities, cultural events, or visits to public places; they also participate less in society than their peers without vision loss (Alma et al., 2011; Crews & Campbell, 2004; Desrosiers et al., 2009; Horowitz, 2004). Consequently, many of these individuals participate in fewer activities than they did previously (Berger, 2011) because, for instance, the inaccessibility of transportation increases challenges already facing the elderly population in general (Berger, 2009; Gallagher et al., 2011). Because leisure activities often involve transportation to other places, vision loss can mean reduced participation outside the home and thus a negative evaluation of those activities. Heyl and Wahl (2001) have argued that reduced participation may reflect a strategy by which individuals maintain control over a far narrower range of activities than they did previously, yet added to a range of activities that they still manage well.

As described by Berger (2009), Laliberte Rudman, Huot, Klinger, Leipert, and Spafford (2010), and Girdler, Packer, and Boldy (2008) promoting awareness of risks that they face and identifying ways to become able to participate in their favorite activities by being careful, being more observant, taking more time, using assistive technology, simplifying occupations, and getting help from others are strategies used in coping with vision loss.

Although vision loss involves a discontinuity of routines and habits, as well as a circumscription of roles and independence (Girdler et al., 2008; Wang et al., 1999), individuals with such loss nevertheless emphasize the importance of independence (Berger, 2009; Laliberte Rudman et al., 2010). By examining narrative data from three quantitative studies of how these individuals adapt to vision loss, Brennan et al. (2001) found that a desire for independence could conflict with a need for practical assistance as the individual’s vision loss develops. Receiving help from others is one method of managing activities and of retaining a social network, getting emotional support, and being able to support family and friends. In other research, by studying constellations of stressors and coping styles, Lee and Brennan (2006) interestingly found that there was a low acceptance of vision loss among participants that coincided with limited efforts to obtain vision rehabilitation services for instrumental needs. As such, it is plausible that not accepting vision loss can explain why this population segment’s emphasis upon independence is emphasized.

Despite difficulties living with vision loss, research has clearly shown that elderly people with vision loss adjust to everyday life by themselves and with the help of rehabilitation services in different ways. Accordingly, to elucidate knowledge that can improve the design of intervention programs aligned with the experiences of older adults, in this study we explore how older adults recently diagnosed with age-related vision loss have experienced and adjusted to new challenges of everyday life.

STUDY DESIGN AND METHODS

To explore how age-related vision loss influences the everyday lives of older adults, we employed the method of in-depth qualitative interviews (Gubrium & Holstein, 1997; McCracken, 1988). The target population was older adults recently diagnosed with age-related vision loss living in a Norwegian municipality with roughly 170,000 residents.

Participants

Inclusion criteria were twofold; participants needed to be at least 67 years old and recently diagnosed with vision loss. We defined vision loss as a degree of visual impairment that could not be corrected by eyeglasses or surgery and that interfered with performing the activities of daily life. Diagnoses described by participants in our study included age-related macular degeneration, calcification, embolus, and cataract. Recently diagnosed means that the individual has met with an eye specialist or other health professionals and been referred to health services in the municipality. Due to lengthy wait lists, these individuals often had to wait for 2 to 5 months to receive services from an occupational therapist. Meanwhile, the participants did not receive any home services whatsoever.

To recruit participants, when an individual meeting the inclusion criteria contacted health services, he or she was informed about the anticipated wait time and told about services offered by the Norwegian Association of the Blind and Partially Sighted. Each of these individuals also received a letter inviting him or her to participate in our study. After a few days, the service provider office telephoned to ask whether the individual wished to participate in the study, and if affirmative, then his or her contact information was relayed to the first author. In all, 10 participants were recruited for data collection over a period of five months. According to Table 1 two participants younger than 67 years were included. the health service office representative considered that their experiences could bring valuable knowledge to the study. Two participants younger than 67 years participated because the health service office representative considered that their experiences could bring valuable knowledge to the study.

TABLE 1 Participants

Name	Age	Living with or by oneself	Number of children	Housing	Environment
Anna P.	78	With ill husband	3	Flat in a multistory block	Suburb
Agnes O.	88	By herself	3	Senior residential flat	Suburb
Marit M.	55	With husband	3	Flat in a multistory block	City center
Martha S.	86	By herself	2	Detached house	Residential district
Solveig D.	65	With husband	2	Flat in a multistory block	City center
Ellen K.	82	By herself	5	Flat in a multistory block	Suburb
Hilde R.	80	By herself	3	Detached house	Residential district
Knut L.	82	By himself	2	Detached house at a farm	Rural area
Inga B.	80	By herself	1	Flat in a multistory block	City center
Bjørn B.	68	With wife	4	Flat in a multistory block	Suburb

Data Collection

To offer participants opportunities to talk openly about vision loss and their experiences with consequent changes in their everyday lives, we developed an interview guide of open-ended questions addressing topics such as daily experiences of living with vision loss, activities before and after vision loss, time spent on activities, new activities, and central conditions affecting everyday life (e.g., desirable activities, restrictions and enablement, need for support, receiving help, and reflections on the future). The first author developed the interview guide and conducted all interviews, each in the house of the particular interviewee and lasting 1.5–2.5 h, during which each participant spoke openly about his or her vision loss and changes experienced in his or her everyday life. After each interview was completed, audio-recorded data were transcribed verbatim and pseudonyms for participants applied. The privacy ombudsman for research ethically approved the study.

Data Analysis

Grounded theory inspired data collection and analysis (Charmaz, 2006). During the analysis, the interviews were first read and then reread to gain an overview of both common and different experiences that the individuals with vision loss faced. We next completed coding in two phases: the initial phase and the focused phase. During the initial coding phase, we affiliated each passage with at least one code by referring to words in the material and phrases from participants, as well as concepts describing situations and activities. During focused coding, we examined larger amounts of data by referring to the most frequent earlier codes in order to define a great part of the content of the recorded material (see Table 2).

TABLE 2 Examples of Initial and Focused Coding

Initial codes	Focused codes
Wanting to buy good food and nice clothesUsing candlelight in the winterTaking a shower both in the morning and at nightBeing unable to find an activity to take the place of knitting	Acting for one’s own sake
Being a burdenNot talking about difficulties	Fearing additional losses
Doing a little housework every dayAsking for helpManaging by oneselfPutting everything in its proper place	Using strategies
Watching television news every dayPaying attention to political decision makingContinuing interest in the news	Being part of society

Writing memos and the process of free writing (Charmaz, 2006) contributed to delimiting and identifying themes that could be further explored, identifying connections among codes, and developing categories. Free writing was especially useful with challenging phases identified during the analytical process, identifying connections among codes, and determining categories and subcategories. The code Managing by myself was considered to be part of both Timing and changes or Holding on to independence; however, further discussion on categories and subcategories ended with making Timing and changes a subcategory of Holding on to independence, which emerged as a more essential part of the data.

Ultimately, we developed three categories: Not as usual or as planned, Holding on to important activities, and Holding on to independence, each with subcategories. Altogether, the categories form the core concept, an idea central to the process of how readjustment influences the everyday life of participants—namely, Good days: an everyday life with small and more wide-ranging adjustments (see Table 3).

TABLE 3 Core Concepts, Categories, and Subcategories

Subcategories	Categories	Core concept
Disturbed routinesLiving with insecurity	Not as usual or as planned	Good days: An everyday life with small and more wide-ranging adjustments
Activities of special importancePrioritizing oneselfBeing a part of society	Holding on to important activities
Timing and changesRequesting and refusing support	Holding on to independence

FINDINGS

The chief finding was that participants managed their everyday lives as best they could, all in the hope of having good days. They generally expressed a desire to be as active in their lives as they had before losing their vision, even if they knew that doing so was impossible. They talked about losses, new challenges, and their joy in engaging in activities and being with other people. The following presentation of categories elucidates how they navigated and reflected on their circumstances.

Not as Usual or as Planned

This category clarifies the consequences of vision loss on individuals’ engagement in the activities of daily life and how they missed participating in some activities. Participants discussed ordinary activities, the tasks that people do without thinking, and activities with special meaning. They lived independently in their homes, where new challenges stemming from vision loss complicated simply continuing to live as before and made doing what they expected and liked to do impractical. This category has two subcategories: Disturbed routines and Living with insecurity.

Disturbed Routines

Participants first spoke about how they missed reading the newspaper in the morning, an aspect of their daily routines related to getting ready for the day and accessing the most central sources of information, both locally and internationally. That desire could explain why Martha read everything in the newspaper, despite her discomfort with concentrating on seeing:

“I can read a piece, but then I have to stop and wait some hours before I can continue.”

Overall, participants could read headlines in the newspaper, as long as the lighting was strong and they used a magnifying glass. Even then, reading headlines required extra concentration and an ability to follow the line of the text. For some participants, problems with reading affected other routines, as well as the expectations that they had set for themselves. At Christmas, Agnes’s traditional offerings to her children and grandchildren were special cakes that had since become difficult to make due to problems with reading the recipe. She missed being unable to perform the annual tradition of bringing along cakes when visiting her grandchildren. She also disliked being unable to read the bank statements mailed to her each month.

While sitting throughout the day, Agnes and others used to do crossword puzzles, whereas Anna, Hilde, Inga, Marit, and Martha used to do handicrafts. Such activity was partly routine while the individual rested or listened to the radio, as was mending or knitting clothes for grandchildren. However, due to vision loss, Marit had to quit her embroidery. Her living room nevertheless continued to display her embroidered pictures, while her knitting rested in a basket by the sofa.

Earlier I knitted for a lot of people—big jackets and sweaters with patterns. But one-colored clothes are tedious. Today, I can manage to do a little of that if the colors contrast and aren’t too dark.

Though once tempted to knit patterns, she reported getting headaches and recognized that it was better for her to discontinue the activity.

Outside the home, Bjørn used to drive when he and his wife would venture out for their weekly shopping or go to their cottage on the weekends. No longer able to drive, however, he described his current everyday life as being empty.

Living with Insecurity

This subcategory has two aspects: activities and the future. First, some participants had to stop participating in certain activities or some activities had become more bothersome and time consuming. Participants conceived this development as a natural part of getting older, but also as a burden, which concerned them about becoming further unable to do what they used to do. Furthermore, it provoked feelings of insecurity with several ordinary yet desirable activities. For example, Hilde was concerned with how her walking had changed, for she now walked more slowly and less easily than before:

I feel insecure, and I don’t want to show others that I’m different from how I was before.

Consequently, she quit going for walks in her neighborhood, because she was insecure with how others perceived her.

Second, there was insecurity with what the future would bring. Bjørn realized that his everyday life after retirement would differ from what he had planned—visiting friends, traveling, and being politically active—which made him insecure about how to cope with his new life.

I need to have something to do; I can’t just sit here.

Although he listened to the radio and ventured out for short walks, Bjørn remained unsatisfied. Inga also spoke about the insecurity she felt:

I feel insecure about what to do in the future, and I don’t know how I can fill the time. I’m afraid that I won’t be able to read or go to the bank or do other different everyday activities.

She had problems recognizing other people, and she felt that other people approached her in a different way as a result. She continued:

If you feel insecure, you aren’t independent.

Her son lived abroad, and she had little contact with her other family members. Feelings of insecurity about the future frightened her, as well as they did others, each of them knowing that increased vision loss could mean increased dependence upon other people.

Holding on to Important Activities

Although participants missed being able to continue all parts of their previous routines and all desirable activities, they did continue to enjoy some activities as before. As such, this category is divided into three subcategories: Activities of special importance, Prioritizing oneself, and Being a part of society. Together, they encompass how participants prioritized activities that contributed to making most days good ones, despite smaller and more wide-ranging adjustments.

Activities of Special Importance

When vision loss made many activities difficult, participants emphasized holding on to those of special importance, including ones that they particularly enjoyed doing, ones they were qualified to do, ones that were important to others, and ones in which they could learn, be creative, or engage with others, if not a combination of those aspects. Reasons for their choices were personal and related to both former activities and what was possible to manage with vision loss. For Hilde, the activities of doing crossword puzzles and reading books related to her self-perception, as well as implied continued knowledge, staying updated, and relaxation. As with reading the newspaper, participants read books, if possible, and did crossword puzzles, albeit by using extra light, a magnifying glass, spectacles, and a tablet and taking more frequent breaks.

For Marta, caring for others who had more problems than she had held special meaning. Though no longer walking as before, she could continue to use the telephone to stay in touch with others and she also stayed creative by writing stories and poems for others on different occasions. She loved playing the piano and said:

Everybody should have the opportunity to do that [playing the piano]. I hear people say that they’re bored, but I don’t know what that is.

When music is important but playing an instrument has become impossible, as was the case for Knut, singing in a choir was a way to adapt, still make music, and be with friends.

All activities mentioned were important for participants to have good days. Such was also the case when they spoke about outdoor life, which was recognizable in several interviews as expressed by the sentiment, “I have to get fresh air.” Participants talked about activities that they could do where they lived, at a seaside cottage, in the forest, or in the mountains and that had been important in their lives. For Knut, this activity was helping on the farm and exploring the nearby forest; for Solveig, it was skiing and playing tennis; and for Bjørn, it was going to his cottage not far from the city. Memorably, Bjørn talked warmly about what he enjoyed most of all about being at his cottage:

The best times are when the weather is good and we can go out and sit in the garden.

He knew all of his neighbors at the cottage, and it was easy for him to go outside the house and into the garden. Others emphasized the special meaning of taking walks in the area, during which difficulties with walking on uneven tracks were mitigated by using walking sticks ito feel safer.

When the weather was good, outdoor life also involved coffee or meals outside the house, activities that meant being with friends, putting effort into making new dishes, setting a nice table, serving wine, and lighting candles.

However, not all participants had a cottage or other place to go where they could relax and enjoy the outdoors. Ellen lived in a multistory block, for example, and on warm summer days, she loved sitting outside with others living there while enjoying coffee, jokes, and having fun—all of the things that could cheer her up. However, because she had become afraid of walking outside on the ice and snow, she did not see much of her neighbors during the winter. Alternatively, Inga, who also lived in a multistory block, reported walking for hours. During her walks, she would visit a shop or run other errands. She said:

I need the exercise. The days would be long without it. Since I can’t look at the television or use the computer, I fill my days with walking. If you walk around a place, you know that it turns out well.

In that way, Inga continued to engage in an activity that she had always enjoyed, met other people in shops, and managed to fill her days in a meaningful way.

Prioritizing Oneself

Efforts to make days good ones also involved caring for oneself, dressing up, and paying attention to one’s appearance. Women participants especially highlighted this fact, which they expressed related to wanting to be seen in a desirable way and to compensating for some of the problems that they had to face. They achieved these goals by placing emphasis on different activities such as spending time and money on a hairdresser, going to the podiatrist, buying new products, dressing up, and using makeup. Anna reflected on spending money on aromatherapy, whereas Marit prioritized herself by joining a weight management course. By contrast, Inga showered twice a day and always applied makeup before going out. She reported that showering made her feel fresh and helped her to sleep well, yet also related to meeting people and being seen by others. She said:

I think that if I relax and look ugly, I will get sick. I am old now and have to dress up to look nice. I don’t want to be part of the group of elderly who are sick and need help—I don’t want that! Because then you can’t live your life. I would like to be seen by others, flirt with the boys, and all of that. Children and grandchildren are all right, but looking good … I have to think like that! I meet a lot of older people like me, but also many that are not like this!

Asked about doing makeup with vision problems, Inga said:

It’s not difficult. I can’t see myself very well in the mirror, but well enough. It’s important, especially for older people, to use makeup. Older people should buy expensive things and spruce themselves up. You achieve another image that way, and younger people like you better. It’s not nice to look at something that’s ugly. There are too many colorless people and things to see.

In sum, participants made different efforts to hold on to a feeling of well-being and to present themselves in desirable ways.

Being a Part of Society

This subcategory emphasizes the importance of being a part of society beyond that of one’s friends, family, and the neighborhood. Keeping apprised of current events, political decision making, or the latest football scores or ski jumping standings was important. For Inga, it was significant for others to see her as she saw herself: as a woman with knowledge and interests. Though she had stopped reading the newspaper, she still listened to the radio; most of all, she liked listening to the BBC and programs about business and psychology. Despite her vision problems, Martha still talked about television programs:

I have to watch public debate programs. That interests me. I have to keep up on what is happening. I listen to Dagsnytt 18 [a daily program on politics and social policy] and programs such as that. I still have these kinds of interests! I read the newspaper, listen to the radio, and spend some time watching TV. But watching TV is hard for me. I don’t like the light; it’s too strong for my eyes. But I can follow what the shows talk about, so it is OK. It helps when I close my eyes now and then. I think that discussions about books are the most interesting things to listen to.

Others wanted to be active participants in political work, including Bjørn, who expressed his reasons for being politically active:

I like to participate and fix things so that life can be better for my fellow members of society. It is through political work that you can solve problems.

However, because he had to withdraw from that kind of engagement, Bjørn was now eager to listen to the radio instead. In general, participants also expressed a drive to learn and gain new knowledge. Using media was one way to keep abreast of current interests and thus continue to be a part of society.

Altogether, participants knew what they wanted to prioritize and emphasized the meaning of ordinary daily activities, yet nevertheless had to make minor adjustments in order to continue performing aspects of their everyday lives.

Holding on to Independence

In regard to everyday activities that were challenging, participants talked about how they, despite the challenges, continued to do what they could. An important strategy included holding on to routines, such as getting up at the same time in the morning, having breakfast, listening to the radio, and, if possible, reading the newspaper. In addition to regular meals, each day they had an agenda with one or more activities that they planned to do. Adjusting to the new situation also involved negotiations about receiving or not receiving support from others. Accordingly, this final category has two subcategories: Timing and changes and Requesting and refusing support.

Timing and Changes

This subcategory has three aspects, each connected to the importance of holding on to independence: timing; new ways of handling challenging activities; and using technology.

Timing relates to being aware that many activities require additional time. For example, Marit started her preparations earlier when hosting her sewing circle or other guests:

I do the shopping earlier, choose to serve food that can be prepared earlier, and clean the house some days before, to be sure that everything will be ready in time.

Hosting could also create uncertainty, such as with stains that she could not see. She described her strategy in response to those difficulties:

I ask if I have stains on my jacket, things like that. If someone in the sewing circle discovers stains on the tablecloth, they know why it looks like that.

By starting preparations earlier and managing her uncertainty, Marit continued hosting friends, serving meals, and decorating her home. Though unable to prevent undesirable environmental circumstances, she found a way to cope with them. Martha had a similar strategy:

When preparing for different situations, I start much earlier now. When I know that something is happening, I don’t start just before I’m leaving the house. I need to know that I’ll have enough time

Challenging activities had to be handled in new ways, such as by always knowing where to find what they needed, as Hilde explained:

I need to know where my things are in order to keep everything in place. My keys have to stay there, my flashlight there, and so on, so that I don’t have to search for them.

In doing housework, Hilde had to learn to calm down and take breaks, such as when washing the windows. To feel safe, she had to control herself, check the hotplate, and set the alarm for the night. Inga knew that the hotplates were off simply by touching the power switch. She added:

You don’t have to see everything that you do; you can manage without! I have learned to unlock the door without looking.

To manage everyday life by herself, she used bank giro transfers to pay the bills, prepared simpler meals, and kept everything in the same place. When she wanted information about prices and expiration dates, Inga asked shop assistants. Meanwhile, other participants would bring along a loupe when shopping, and Ellen in particular chose containers of sandwich spread placed at the very back, since she thought that they would be the freshest. To be able to continue watching television, participants moved nearer to the screen and accepted that they might nevertheless be unable to see it at all.

Before her vision problems developed, Martha walked 35 minutes into the city to run errands. After her vision problems worsened, however, she began to use the bus, meaning that she could not walk as much as she preferred or was used to. To compensate, she performed exercises as part of her morning routine. When going to the supermarket in the winter, she used a sled to bring her groceries home, whereas in the summer she walked beside her bicycle. Other participants had stopped using the bus because it was difficult to see which bus was arriving. Instead, they walked, often with crampons affixed to their shoes or with the aid of a walking stick.

Still able to read, the youngest participants in our sample had become active users of new technology, such as the Internet, audiobooks, MP3 players, and e-book readers. They had family members who helped them with these devices, and as a result, they developed confidence in learning and using these technologies.

Requesting and Refusing Support

All participants received some sort of support and help from family or friends, if not both. At the same time, they expressed a need to get along by themselves as they had always done. They feared situations in which they would have to ask others for help, which posed two dilemmas. First, there could be conflicts in their relationships with their children and family members or organizations, and second, there could be problems with how they wanted to live their lives and see themselves. For some participants, however, these dilemmas were not problems. For instance, Knut, Ellen, and Bjørn had children who lived nearby and who drove or did the shopping for their parents during the winter. Solveig discussed her relationship with her husband as her most important source of support, and she emphasized that she did not need much help:

Sometimes it is important to have a wailing wall. If I am depressed, he [her husband] tries to encourage me. He understands my situation. Sometimes he can read aloud for me—you know, short things. And I think that he could do that more often if I needed it, because he’s thoughtful and kind. I’ve asked him for help only a few times, often in shops when I can’t see the prices. … And I have good contact with my sister, and my children often ask me how things are and how my vision is and about my treatment. They are so thoughtful. … It’s very good for me to have a sister to talk to.

By contrast, Hilde expressed a more ambivalent attitude toward her children. She wanted them to be more active in asking to help her, yet also stated:

I hate the thought of being a burden or of encumbering my children with anything.

She thought that her children did not understand her situation, and at the same time, she knew that they could see that she had difficulties.

“They are Afraid that Something Could Happen to Me—That I Will Hurt Myself.”

Although her children urged her to sell the house and move into a safer, more practical flat, Hilde disagreed. She wanted to live in an environment familiar to her as long as possible. Above all, she hoped that her children would be more interested in her new life situation and thus offer her practical help. Knut, who lived on a farm, insisted on walking 200 m to fetch the mail by the main road, even if the narrow road from the farm was suddenly impassable due to wind and snow. Though his son and daughter-in-law thought that he should refrain from such activity, he insisted, claiming that he needed to get out of the house and that walking outside in the wintertime would enhance his chances of managing longer walks in the forest next summer.

In general, participants needed and desired more care and support than they had earlier in their lives. At the same time, they often refused help or expected to receive in a way that did not embarrass them. They expressed a fear of being treated differently than before and that their difficulties would be seen as more extensive than how they actually experienced them. Furthermore, they did not need or want a lot of help, but did seek practical assistance and a feeling of support. At the same time, they wanted to manage most of the challenges by themselves. As Inga reflected:

If I start getting help from others, then I might become dependent on it, and then I would feel stupid. I have never received help from anyone. I have always paid my bills, and I have never needed to be nice … which is how we said it when I was younger. I don’t want to be subservient!”

Inga also expressed a need to be equal to other people and thus treated with respect. At the same time, she expressed pleasure with getting help and wanted someone to support her. By slight contrast, Anna and Agnes were grateful to their friends who could give a hand in social situations and be of support when they needed someone to talk to. These friends did not demand anything, for they often faced similarly circumscribed situations.

Participants’ expressions of ambivalence concerning help and support from their family members also surfaced in discussions of information that they had received from the Norwegian Association of the Blind and Partially Sighted. The organization offered a home visit to inform participants about its work, meeting places, and adaptations that the individual could make to render everyday life more manageable. Practical assistance from the organization had been helpful for individuals who had asked for it, especially regarding information about technology. At the same time, participants refused membership, since they did not see themselves as having such extensive problems.

DISCUSSION

The aim of this study was to explore how older adults recently diagnosed with age-related vision loss experience and readjust to their new everyday lives. This discussion of our findings falls into two parts: findings in line with similar studies and findings that shed new light on the day-to-day living of older adults with age-related vision loss.

Aging generally involves changes in at least one area of life due to disease, loss, or different kinds of environmental changes, if not a combination of those causes. As documented in earlier studies, experiencing vision loss can be overwhelming and involve a number of new challenges in order to maintain desirable participation (Gallagher et al., 2011; Girdler et al., 2008; Heyl & Wahl, 2001; Laliberte Rudman et al., 2010; Wang et al., 1999). Nonetheless, our findings show how participants mitigated challenges individually and according to how they lived their lives prior to vision loss, as well as by adjusting to everyday lives that allow them to stay involved. Although these older adults were of an age at which people expect to face new difficulties, they were grateful that the challenges were not any worse. Their vision problems could be seen as a natural part of getting older. As Crews and Campbell (2004) and Horowitz (2004) also found, individuals in this segment of the aging population had been told by eye specialists that poor vision due to age could not be helped. This finding may indicate why our participants had few demands for any special kind of support, except for practical help with technology, and without any specific ideas of what that could be. Instead of concerns about support, our findings show how participants emphasized and gave meaning to arguably ordinary activities, such as making good meals, sitting in the garden, and buying new clothes. By giving meaning to what could be handled as before or with only minor adjustments, participants held on to important parts of their ordinary everyday lives. For example, the activity of reading was important in their day-to-day living, as Ryan et al. (2003) have also pointed out, since all participants expressed being able to read as crucial. As in Ryan et al.’s (2003), our findings indicated barriers to instrumental reading activities, including reading recipes, financial statements, road signs, and product labels, yet also the use of strategies such as employing technology and large-print books, listening to the radio instead of reading the newspaper, and asking for assistance when needed. Similarly, in both their and our study, reading was posited as enjoyable and important for leisure, in addition to being a way to keep up with what happens in society. Our results thus show how reading can be understood as an important condition for participating in most of the other parts of everyday life activities that participants had expectations to continue doing, both inside and outside the home.

Unsurprisingly, participating outside the home poses challenges for people with vision loss in general (Berger, 2009; Gallagher et al., 2011; Heyl & Wahl, 2001; Lamoureux et al., 2004; Ryan et al., 2003), largely due to the unreadability of information, but also due to the inaccessibility of transportation systems and seasonable changes. For example, Berger (2009) found that limited universal design in communities and challenging transportation options were chief problems that curtailed individuals’ participation in leisure activities outside the home. Gallagher et al. (2011) found dependence upon others when walking outside to be a consequence, similarly to Laliberte Rudman and Durdle’s (2008) observation that having to thus depend on others simply reduced their participation outside the home. Interestingly, participants in our study demonstrated awareness of the challenges outside their homes, yet had found ways of adjusting their walks and transport by bus as means to remain active beyond their domestic spaces. One reason for this finding may be that for participants in our study, vision loss is new and represents an early phase of living with vison loss. Another aspect may be that, as Berger (2009) found, a belief in one’s own ability to perform activities outside the home is crucial to mitigating challenges posed by age-related vision loss, especially among the generation of older adults in Norway, who are used to walking outside in all seasons and know how to adjust to different kinds of weather, even those involving ice and snow. Challenges with using transport systems or walking for longer distances may be seen as parts of the same adjustment.

Consequently, despite difficulties with managing many ordinary activities, such as reading or participating outside the home, participants emphasized how they managed their everyday lives with an overall experience of what we have called good days. Further discussion can expand our findings on how participants experienced good days, despite that everyday life also imposes ambivalence, particularly regarding personal appearance and independence.

Personal Appearance

Findings in the literature show that vision loss can pose consequences for personal appearance as it relates to social participation. Travis et al. (2004) found that taking care of one’s appearance and eating could be difficult, whereas Laliberte Rudman et al. (2010) described participants’ experiences with the risk of being embarrassed while eating due to new challenges caused by reduced vision. Our findings indicate that challenges with eating were not seen to be problems, however; nevertheless, Marit has to check for stains after eating. Our results further reveal the importance of appearance to participants and how they decided to prioritize activities connected to that sentiment. In that sense, appearance relates to how an individual expresses him or herself with clothes, makeup, and how he or she walks, eats, and manages money, all challenges that made adjustments or decisions to quit doing them necessary. Another aspect of personal appearance revealed was the feeling of embarrassment of walking differently from before, which Laliberte Rudman et al. (2010) described as a feeling of social risk representing a fear of appearing differently in meaningful activities and how the individual sees him or herself. Our results depict how participants viewed decisions about handling challenges with ambivalence. For example, continuing as before may have involved a risk of being seen and treated by others differently from before; however, by quitting activities such as going for walks or being with friends, the individual risks losing his or her favorite meaningful activities. Our findings thus show how vision loss can pose practical consequences for more extensive parts of everyday life, in addition to how the individual perceives that others as well as him or herself perceive him or her. By placing attention on how they present themselves to others, participants expressed concerns with how interaction with other people also can be influenced by changes in appearance.

Independence

As in the studies of Girdler et al. (2008) and Laliberte Rudman et al. (2010), our findings show that being regarded as dependent, in need of help for transport, or having to receive services or move from home are deemed the most dreaded outcomes of age-related vision loss. Participants in those studies and in ours feared becoming unable to make choices and being in charge of their living situations. Consequently, maintaining independence has been reported to be an ongoing struggle for these individuals in many studies (Berger, 2009; Brennan et al., 2001; Gallagher et al., 2011; Laliberte Rudman et al., 2010). Although participants in our study could manage most of their everyday activities for now, they worried about the future. For example, they acknowledged that in becoming unable to perform one activity after another, the more they would be at risk of having to ask others for help. They nevertheless expressed ambivalence with knowing that they now need or will need assistance in the future and their strong desire to be independent of others. Brennan et al. (2001) have pointed out that the need for independence could pose a conflict as vision loss develops, since support from others is a way of maintaining contact with their social networks and being a support to others. The need to maintain contact with nearby family and receive practical help from them was also important. Our analysis furthermore indicates that participants expressed both a desire for practical help and an understanding of the experiences that vision loss can affect. At the same time, older adults in our sample expressed a wish to receive practical help that placed no demands on how they should take care of themselves and live their lives. For these participants, living with vision loss is a new experience, and the ambivalence that they express about their independence can be perceived as a fear of missing out on more meaningful activities and appearing in undesirable ways, particularly those requiring dependence upon others in everyday activities that they once carried out independently.

Participants in our study were recently diagnosed with age-related vision loss and could manage in readjusted, independent ways, though their expressions of fear for the future were central. They know that any accident at home could raise new questions of the safety of staying in their houses or living alone, all questions that they dislike. That may be why older adults with vision loss minimize what they report about their problems (Laliberte Rudman et al., 2010).

Persuading older adults with vision loss to stop being as active as before—for example to quit walking to fetch the mail by the main road or to sell the house and move into an arguably more practical flat—can be seen as ways to remove fears with problems resulting from their independence. It can also be perceived as overprotection or the prohibition of a desirable situation for the individual who wants to continue doing his or her favorite activities and living in familiar surroundings. Keeping these discussions at bay and refusing to receive support is in line with Lee and Brennan’s (2006) findings, which show that most older adults with vision loss are reluctant to ask for help and use rehabilitation services. Those authors also found a low acceptance of vision loss, possibly facilitated by the person’s ability to integrate vision loss into his or her living space. In an early phase of vision loss, as our study shows, such a lack of acceptance can pose challenges, especially when the feeling of independence is threatened.

Altogether, the way that activities are readjusted and therefore managed can signify a successful readjustment to the challenges of everyday life. Our study’s participants compensated their losses in different ways as a means to experience good days, reduce restrictions, and avoid risks. They additionally expressed a fear of future problems and ambivalence about what decisions to make regarding those readjustments. In one way or another, the decisions that they made posed consequences for how they saw themselves and presented themselves to others.

By extension, findings from our study show how the model of selective optimization with compensation, which focuses on successful adaptation in aging (Baltes & Carstensen, 1996), can be a method of understanding these processes. Individuals adjusted to this new situation by prioritizing what was important and by compensating difficult, stressful situations with new techniques and technology, meaning that they actively adapted to some risks that they faced and other environmental circumstances. At the same time, they feared future extended vision loss, not being able to manage everyday life challenges, losing desirable activities, and becoming dependent upon others.

Implications for Practice

Our findings indicate that older adults with age-related vision loss need different kinds of support at an early stage—that is, as soon as they are diagnosed. To be able to live the everyday lives that these individuals value, rehabilitation services should meet the different, complex challenges that vision loss creates. Rehabilitation programs described by Eklund and Dahlin–Ivanoff (2006), Rees et al. (2010), and Schoessow (2010) have all focused on practical problem solving and emotional reactions to vision loss. Our findings more specifically indicate that services and rehabilitation programs should also concentrate on how vision loss can influence interactions between individuals and social environments, particularly regarding how to appear and be seen by other people.

Fear of dependency is present in both this and other studies of adults with vision loss, hence the subject’s urgency in rehabilitation programs. Skills training and information can reduce that fear, but since independence is central in most findings, it should also be addressed in order to give the individual an opportunity to express specific concerns about it. Because vision loss can be difficult for other people to detect, information about practical consequences and how to handle them can contribute to the confidence of family members in helping without making decisions for the individual with such loss.

Getting out of the house and spending leisure time with friends and family are important, yet described to decrease with vision loss (Heyl & Wahl, 2001). Problems with getting around are also major concerns for people with vision loss (Gallagher et al., 2011). As such, skills training with various transport systems and walking in different areas—for example, in traffic and on rough terrain—can contribute to feelings of safety in participating in life outside the home. Making changes to the environment and emphasizing universal design are also necessary, though such action is out of the hands of health services, despite being necessary knowledge for people responsible for planning physical environments. Indeed, universal design can significantly help older adults with vision loss, as well as most other people.

METHODOLOGICAL CONSIDERATIONS

The findings in our study stem from a limited number of interviews with older adults recently diagnosed with age-related vision loss. Findings indicate that the experiences of these participants in several aspects corroborate those of other studies of older adults living for longer periods with vision loss, as well as older adults in general, including fear of becoming dependent upon others and the importance of being a part of society. At the same time, experiencing snow and ice in the winter influences how these participants spend their time, though this would likely differ for persons living in a country with a different climate.

In this study, the spread in age was from 55 to 88 years. Although that range was more than originally planned, it meant that we completed the study with more extensive information that revealed similarities and differences in the group of participants and thus enriched the data. It also constituted information to consider when planning rehabilitation programs for groups of older adults recently diagnosed with age-related vision loss.

CONCLUSION

Older adults recently diagnosed with vision loss make necessary adaptations to their new everyday lives in order to be able to continue living by themselves in familiar environments. They fear that more extensive vision losses involves the risk of dependency upon others and problems in continuing to actively participate in society. To negotiate the challenges of everyday life and especially to prevent the risks that they fear, an early intervention program for this segment of the population should be offered shortly after diagnosis with vision loss.

This study contributes knowledge concerning how older adults recently diagnosed with age-related vision loss readjust to everyday life. Since increasingly more elderly adults will face vision loss amid population aging worldwide, new research questions should ask how such knowledge can be implemented in rehabilitation programs at the municipality level in different contexts and at early stages of vision loss. Different kinds of programs should also be evaluated to shed light on the experiences of individuals and to become able to express the effectiveness of different kinds of programs.

Acknowledgments

The authors would like to thank the participants for sharing their experiences. Thanks also to our collaborating partners at section of occupational therapy in Trondheim municipality, as well as Sør-Trøndelag University College and the Occupational Therapy Programme for financially supporting the study and the writing of the article.