A qualitative descriptive design using individual interviews was followed to access the experiences of people living with cognitive impairment.
Participants and recruitment
Participants were recruited from the Trøndelag Health Study (HUNT; (29), a longitudinal population health study in Norway, and the sub-study HUNT4 70+, which was completed in 2019. The total number of participants in HUNT4 70 + was 11,700, and all survivors were invited to participate in a follow-up study, Ageing in Trøndelag (AiT), in the autumn of 2021, four years after the baseline assessment.
Participants from four municipalities in Trøndelag were recruited while at testing stations during data collection for the AiT study. The staff at the testing stations distributed information about the study, an invitation to participate in individual interviews, and the research group»s contact information. All individuals interested in participating were contacted by the research group.
The selection of participants was random and based on age-adjusted threshold values on the Montreal Cognitive Assessment Scale (MoCA; (30) at the time of data collection for the AiT study. A brief screening tool that provides an immediate assessment of a person’s cognitive condition, MoCA is a well-known, widely used instrument for identifying and diagnosing cognitive problems, particularly in older adults. The age-specific cut-off scores on MoCA used to identify cognitive impairment were < 22 for 70–79-year-olds, < 21 for 80–89-year-olds, and < 20 for individuals 90 years old or older (ref MoCA).
Variation in the sample was ensured by including both women and men 72–84 years old with a mild to moderate degree of cognitive impairment. All participants were either living alone or with a partner (i.e. cohabitant), and the sample included participants from urban and rural municipalities. The participants» characteristics are presented in Tables 1 and 2.
Interviews
The interviews were conducted by IM, with some assistance from AMMR, using a semi-structured interview guide. The questions focused on experiences with living with cognitive impairment, particularly regarding changes in cognition, function, and quality of life, as well as experiences related to having been diagnosed with dementia. The opening questions were introduced by repeating the aim of the study and a reminder of their acceptance to participate.
The interviews were performed either at the AiT testing station, in a meeting room in a municipal office, or at the participants» homes based on the participants» preferences in the period between November 2021 and August 2022. Before questions were asked, the aim of the study was reiterated, and the participants were reminded of their acceptance to participate. The interviews lasted between 30 and 60 minutes, were audio-recorded, and were transcribed verbatim before analysis.
Analysis
The transcribed interviews were analysed with reference to Malterud (31) using systematic text condensation in four steps. First, all transcripts were read to gain an overall impression and identify preliminary themes that could meet the aim of the study. Second, meaning units in the text were extracted, labelled with codes, and categorised. Third, the preliminary themes were converted into code groups and subgroups according to the meaning unit. Fourth and finally, a summary of the findings of the interview analysis was prepared.
Preunderstanding
The first author (IM) has a master’s degree in gerontology and extensive experience with working in nursing homes and with people with dementia and their next of kin. The three co-authors are medical and health and social science researchers, as well as one registered nurse (AMMR) and one psychiatrist (GS). They have a wealth of experience in the subject of dementia.Results
The sample comprised 15 participants: six who reported being diagnosed with dementia and nine who had cognitive impairment compatible with possible dementia but who had not been diagnosed with dementia, at least according to them. Those two groups are hereafter denoted as «living with a diagnosis» and «living without a diagnosis», respectively. All participants had a MoCA score in accordance with the inclusion criteria.
The characteristics of the study population are shown in Tables 1 and 2.
Table 1
Participants diagnosed with dementia
Name
|
Civil status
|
Age (in years)
|
Gender
|
Urban or rural residency
|
MoCA score
|
Doris
|
Married
|
76
|
Woman
|
Urban
|
10
|
Dagny
|
Married
|
79
|
Woman
|
Rural
|
17
|
Diana
|
Married
|
77
|
Woman
|
Urban
|
20
|
Daniel
|
Married
|
83
|
Man
|
Rural
|
18
|
David
|
Married
|
84
|
Man
|
Urban
|
8
|
Dennis
|
Married
|
80
|
Man
|
Urban
|
12
|
MoCA: Range: 8–20, mean = 14
Age: Range: 76–84, mean = 80
|
Table 2. Participants not diagnosed with dementia
|
Name
|
Civil status
|
Age (in years)
|
Gender
|
Urban or rural residency
|
MoCA score
|
Oscar
|
Cohabitant
|
72
|
Man
|
Rural
|
20
|
Olivia
|
Single
|
77
|
Woman
|
Urban
|
19
|
Odin
|
Married and living alone
|
84
|
Man
|
Urban
|
17
|
Oline
|
Single
|
81
|
Woman
|
Urban
|
11
|
Oda
|
Single
|
77
|
Woman
|
Urban
|
15
|
Oliver
|
Cohabitant
|
75
|
Man
|
Urban
|
17
|
Olav
|
Married
|
79
|
Man
|
Rural
|
17
|
Olga
|
Married
|
76
|
Woman
|
Rural
|
20
|
Otto
|
Married
|
76
|
Man
|
Rural
|
21
|
MoCA: Range: 11–21, mean = 17
Age: Range: 72–84, mean = 77
As shown in Table 3, the analysis revealed three categories of experiences with living with cognitive impairment with or without a dementia diagnosis: (1) experiences with changes, (2) experiences with being diagnosed with dementia, and (3) existential experience.
Table 3
Experiences with living with cognitive impairment and dementia
Category
|
Experiences with changes
|
Experiences with being diagnosed with dementia
|
Existential experiences
|
Subcategories
|
Changes in cognition
Changes in function
Emotional reactions
|
Reactions upon receiving the diagnosis
Transparency and stigma
|
Relations
Dignity and future
|
Experiences with changes
The category «Experiences with changes» is divided into three subcategories, all capturing the participants» experiences: (1) changes in cognition, (2) changes in function, and (3) emotional reactions.
Changes in cognition
Changes in cognition led to several challenges reported by participants living with a diagnosis, including the experience of becoming more forgetful and finding it harder to express themselves: «I find it more difficult to remember things and to orientate myself» (Doris). Some experienced saying things that were not true, and some felt more tired than before being diagnosed. They had become more sensitive to stress and explained that they needed more rest in order to concentrate. One participant was concerned about their need for predictability and for more time to prepare before meeting other people. Diana found it painful to experience not remembering where she was going when she and her husband went for a drive. She described experiencing «a complete stop» in her mind: «Sometimes I don’t know what I am supposed to do. It comes to a complete stop» (Diana).
Most participants living without a diagnosis also experienced changes in cognition. They found it particularly difficult to remember names but also reported more serious symptoms such as misplacing things, being forgetful, and struggling to learn new things: «I have a hard time learning new things» (Oline). Otto found it challenging to perceive the content of newspapers and reported having to read articles repeatedly in order to comprehend them: «I have to read something many times to comprehend it».
Some living without a diagnosis found such changes to be unproblematic: «I’m healthy, and there’s no need to talk to the doctor about it» (Oscar). Others, however, had considered discussing the changes with their general practitioner (GP) and being assessed for cognitive impairment. Olivia was unsure whether she had a diagnosis of dementia after her brain had been scanned and she found herself experiencing extreme forgetfulness: «I don’t know if I have dementia, but I am very forgetful». Two participants were unsure whether a stroke had caused the changes that they had experienced, which included dizziness as well as problems with speaking and/or writing. However, most participants living without a diagnosis had not sought help for their symptoms but said that they would contact their GP if they experienced more severe problems: «If my memory gets worse, I»ll have to go to the GP» (Olivia).
Changes in function
For some, changes in function had limited their driving capabilities, and half of the participants living with a diagnosis had lost their driver’s licence, which they viewed as being both unfair and difficult. In fact, Daniel said that losing his driver’s licence was the worst part of being diagnosed with dementia: «The worst part was that I wasn’t allowed to drive a car anymore». Others understood that driving was no longer relevant, whereas ones who still had their driver’s licences were grateful that they could continue to drive. None of the participants living without a diagnosis had lost their driver’s licences, and many of them still drove and considered themselves to have mastery in the skill. However, one participant living without a diagnosis reported becoming calmer after taking the initiative to no longer drive.
Considering other functions, several participants living with a diagnosis reported still being capable of doing most activities of daily living, including showering, making coffee, cleaning, and shopping: «I manage to shower and make coffee» (David). Several also claimed that their functional capacity was reasonably good and that they had not yet experienced major difficulties, although some had experienced limitations, including not being able to go out alone anymore. Diana described how cleaning her house had become difficult and that she lacked the initiative to face the challenge. As a result, she no longer felt as though she was a proper housewife and stated that asking for help with cleaning made her feel stupid: «I’m not a proper housewife anymore. I can’t do it» (Diana). At the same time, she described her house as no longer being suitable housing because she could not tend the garden in the way that she had done previously. Although she was ready to move into a more suitable home, thinking about the decision to move was exhausting for her. Another participant living with a diagnosis, Dagny, described wanting to be more physically active but was restricted by the fact that she was no longer allowed to go out alone: «I want to exercise more, but my husband wants to know where I am at all times».
All participants living without a diagnosis experienced coping quite well with everyday life. For example, they claimed to remember appointments and to not get lost: «I don’t forget appointments and things like that» (Olga). They also claimed to have few problems, if any, in their daily living: «I don’t have any problems now, but I don’t know what it will be like in the future» (Oliver). Several felt that they were fit and still had a lot of desire to contribute: «I haven’t lost my desire to work» (Otto).
At the time of the interviews, two participants living with a diagnosis were receiving regular municipal services: one for drug administration, the other for weekly day care at a day care centre. A participant not living a diagnosis was also receiving drug administration services from the municipality.
Emotional reactions
Some participants living with a diagnosis reported being irritated and angry as well as sad more often than before being diagnosed. Some were concerned that their anger and irritability were afflicting their spouses: «I take it out on my husband when I get angry» (Doris). Dagny became stressed and irritated when she could not remember people’s names and expressed sadness in having become so forgetful that she could no longer be responsible and lead activities as before: «I’m too forgetful to be responsible now. That’s a source of sadness for me» (Dagny). One participant believed that dementia had made her more nervous, while another experienced becoming more suspicious when meeting people and was afraid that they were talking about her behind her back: «I imagine they’re talking behind my back» (Doris). Last, Otto, one of the participants living without a diagnosis, also reported being more irritated than previously: «I get annoyed more often than before» (Otto).
Experiences with being diagnosed with dementia
The category «Experiences with being diagnosed with dementia» encompasses the experience of initially being diagnosed with dementia, namely in two subcategories: (1) reactions upon receiving the diagnosis and (2) transparency and stigma.
Reactions upon receiving the diagnosis
Every participant living with a diagnosis had felt relieved upon being diagnosed: «I think it was a relief to get the diagnosis» (David). It seemed crucial to finally have a name for the changes that they were experiencing and an explanation for those changes: «In receiving the diagnosis, I got a name for it [my condition] that I can share with others» (Doris). Some experienced a sense of calmness after being diagnosed. Most had expected the diagnosis upon receiving it, and the one who was surprised had nevertheless suspected that something was not right.
Daniel experienced sadness upon being diagnosed. Although receiving the diagnosis was a relief and provided an explanation for the changes that he was experiencing, he found it difficult to accept the diagnosis: «I don’t want to admit my dementia» (Daniel). Even so, he and the others had all come to terms with being diagnosed with dementia. Although most participants had noticed a change in their cognition, a few reported becoming aware only once their family members had reacted to changes in their cognition: «My wife noticed there was a change, that I’d become slower in doing various things» (David).
Transparency and stigma
Most participants diagnosed with dementia were open about their diagnosis: «I’ve come out about it, even though it’s no fun to have been given that label [Alzheimer’s]» (Doris). However, some had only told their next-of-kin about the diagnosis, while others only disclosed their diagnosis upon being asked directly about their situation. Meanwhile, one preferred to describe how she felt rather than use the word dementia. In any case, all participants living with a diagnosis reported receiving highly understanding reactions from others when they were open about how they felt. One said that she was proud to be open about her diagnosis and refused to be ashamed of the disease. Nevertheless, Dagny reported receiving foolish answers when she was open about her diagnosis and that others wanted to diminish the symptoms: «I often get foolish answers when I tell them how I feel».
Existential experiences
The category «Existential experiences» is divided into two subcategories: (1) relations and (2) dignity and future.
Relations
Of the participants living with a diagnosis, several experienced being isolated and in less contact with people than before being diagnosed: «I miss being with people» (Diana). Doris noticed having become withdrawn and quiet in social settings. She did not consider meeting people to be much fun anymore, and she often declined invitations, which marked a significant change from her accustomed behaviour. She added that she had become more tired having people around her (Doris).
Several expressed dependencies on their spouses and believed that living at home would be difficult without their support and help: «I wouldn’t be able to stay at home without my husband» (Diana). At the same time, Doris wondered how her spouse could bear living with her: «How can he live with me?» One participant hoped that she had taught her children how to take care of her in anticipation that her condition would worsen.
Meanwhile, of participants living without a diagnosis, several experienced being more isolated and not as active anymore. Oda reported having «less contact with people now than previously» and not being in contact with friends or neighbours: «We don’t see so many people anymore». Olivia felt very lonely and said that becoming old was worse than she had imagined: «I knew that getting old was going to take its toll, but that it was going to be so damn hard? I wasn’t aware of that». She had no one to turn to if she needed help or support. She missed being out among people, going to cafés, and being able to chat with others. She was also the only participant who was open to being assigned an activity friend for more social contact:[1] «I’ve tried phone friend, but it didn’t work. I’m open to trying an activity friend» (Olivia). By contrast, one participant was thankful that he had many people, including several good friends and friendly neighbours, who would step in if he needed help.
Dignity and future
Many participants living with the diagnosis were afraid of losing their dignity, and one expressed that it was important for her to participate, to be able to contribute, and to be something to someone: «It’s important for me that someone needs me» (Dagny). Doris highlighted that she was more than just her dementia and had a strong desire to live and to exercise influence over her life: «I’m not just my disease. I’m also myself sometimes».
Several were reluctant to think about the future and unsure of what it would bring. They were willing to move into a nursing home if necessary: «I know I’m getting worse, and obviously I»ll have to go to a nursing home if I get a lot worse» (Doris). Others were not afraid of the future or the disease but hoped to be able to continue living as they were at the time of the interviews for as long as possible: «I hope that I can live like this for a long time» (David). Even so, another was prepared for illnesses that come with such an advanced age: «I’m so old, and there will be more illness and ailments» (Dennis).
All but one participant living without a diagnosis said that they had a good life and would not have it any other way: «I miss nothing» (Oscar). While most did not fear the future or think about it very much, Olivia was rather anxious about what the future would bring: «I don’t dare think about the future».