Frail older people with decreased cognition can perceive reduced self-determination in self-care and social relationships

Abstract

Background

Self-determination in old age is essential for people’s experiences of good subjective health and quality of life. The knowledge concerning how frail older people with decreased cognition perceive their ability to be self-determined in the different dimension in daily life is, however, limited. The aim of this study was therefore to explore the relationship of self-determination and cognition in frail older people.

Methods

This study was a cross-sectional secondary data analysis using baseline data with 119 frail people 75 ≥ from a larger randomized control trial. Self-determination was measured with the statements from the Impact on Participation and Autonomy-Older persons (IPA-O). Cognition was measured using the Mini Mental State Examination (MMSE), where decreased cognition was broadly defined as a score below 25 points. Fisher’s exact test was used to test differences in proportions of perceiving self-determination in relation to cognition. The Relative Risk (RR) with a 95% Confidence Interval (CI) was used to explore the risk of perceiving reduced self-determination in relation to cognitive functioning.

Results

Nearly the entire study population, regardless of cognitive functioning, perceived self-determination in Financial situation. For people with decreased cognition, the relative risk for perceiving reduced self-determination was statistically significant higher in activities related to Self-care and in Social relationships when comparing with the participants with intact cognition.

Conclusion

Perceiving self-determination when being old, frail and having decreased cognition is possible but is dependent upon which activities that are involved. Organizing healthcare needs according to the older people’s wants and wishes is crucial regardless of people having a cognitive decline or not when the effort is to enable the people to be as self-determined as they want. The frail older people with decreased cognition should be treated as being experts in their own lives, and healthcare professionals should navigate the older people to get to their desired direction.

Trial registration

ClinicalTrials.gov, NCT02773914. Retrospectively registered 16 May 2016.

Introduction

Being able to decide in one’s own life, i.e. exercising self-determination, is both natural and fundamental regardless of age. Exercising self-determination has been linked to positive health [1, 2], and an improved quality of life [3]. Self-determination can be defined as a process of having control and ethical/legal rights, and ability and knowledge to make decisions of a person’s free choice [4]. Internationally, health and social care have shifted during the last decades towards strengthening people’s self-determination concerning their own health and social care by several acts and movements [5,6,7,8,9]. Two recent movements designed to help older people to identify their own health priorities, and then to align their care with their priorities highlights the importance of involving older people in their care process and in making decisions. These evidenced-based frameworks are the Age-Friendly Heath System [8, 9] and the Patient Priorities Care (PPC) approach [10, 11]. The Age-Friendly Health System [8, 9] is a framework built up on the four M’s what matters, medication, mentation and mobility. What matters focuses on what is important for the older people regarding their own healthcare and their daily life, with the goal to create a patient-oriented care plan. Medication, focuses on using only age friendly medication when needed, which means using medication that does not affect what matters to the older people, their mentation, and their mobility. Mentation, focuses on preventive care and management directly towards the older people’s mental health, with regards to delirium, dementia and depression. Finally, mobility, focuses on older peoples possibilities to continue moving safely, which in turn enables for them to do what matters in their lives [9]. The PPC approach [10, 11] moves from focusing on only the management of individual diseases, towards helping older people identify their own health priorities. This approach [10, 11] recognizes that patients are the experts on their own health, and know best what they want from their healthcare. On the other hand, healthcare professionals are the experts on how to get the patients in the right direction. Delivering care based on the PPC approach [10, 11] will result in a reduction of unwanted and unhelpful care and medications while supporting appropriate health and community-based care, as suggested by the Age Friendly Health System [8, 9].

Focusing on the older people’s priorities and what matters to them is important when delivering evidence-based, high-quality of care [9, 10]. However enabling self-determination in people is easier in theory than in real life practice. This is especially crucial for people with high age, who need help when performing daily activities [12]. When frailty and reduced cognition are added to the puzzle, older people’s possibilities to exercise self-determination may be endanger to an even greater extent. Frailty is a geriatric syndrome that is related to a deterioration of multiple physiological systems in high age [13], that often results in decreased abilities to perform daily activities and morbidity [14]. Knowledge concerning to what extent frail older people with decreased cognition exercising self-determination in diverse dimensions in their lives is sparse. Having this knowledge could be important when developing care plans for older people with decreased cognition, so they can perceive that their care is self-determined friendly. Previous research [15] has shown that cognitively intact, community-dwelling older people living in Sweden experienced their self-determination as a shifting process, from governing oneself, to being governed by others. Reduced possibilities to govern were identified when the relationship and the communication between the older people and professionals were lacking [15]. Moreover, an earlier study [16] identified that older people living in nursing homes in Finland who were cognitively intact experienced barriers due to their physical frailty, declines in daily activities, and because of health care professionals’ and older people’s attitudes towards them. When the older people controlled when they went to bed, got dressed, and controlled activities related to privacy and social life with their relatives, their own free will was realized [16]. Further, another study [17] showed that people with decreased cognitive functioning living in Australia had a desire to remain an important part of decision making regarding their own life for as long as possible, despite what the future might be. The older people wanted support that was subtle, and to be assisted while they still were able to make decisions. When health and home carers forced decision upon them, the older people felt marginalised and excluded [17]. Self-determination in old age is, thus, a universal phenomenon that has been studied in several countries. However, there is still a gap in comprehending how frail older people with decreased cognition experience their self-determination in different dimension in daily life. Therefore, the aim of this study was to explore the relationship of self-determination and cognition in frail older people.

Methods

Design

This study was a cross-sectional secondary data analysis using baseline data from the larger CGA-Swed study [18], which was a randomized control trial with frail older people (75 +) living in the west coast of Sweden. The study was approved by the Regional Ethical Review Board in Gothenburg, ref. no: 4899–15. Trial Registration: ClinicalTrials.gov, NCT0277391. The study also followed the ethical principles for medical research involving human subjects – The WMA Declaration of Helsinki [19].

Sample and procedure

In this study, the sample consisted of baseline data with a total of 119 people 75 years or older, in need of an unplanned hospital admission to a medicine or geriatric ward, that were screened as frail in accordance with the FRESH-screening instrument [18, 20]. Potential participants were invited to join the study by the care coordinator in the emergency department. Both verbal and written information regarding the study was provided. Potential participants were informed of their right to withdraw from the study at any time, that all data would be handled confidentially, and that no individuals could be identified. Those who agreed to participate signed a consent form. Some of the participants had decreased cognitive functioning making them unable to understand the information well enough to give their consent. In these cases, their next of kin signed the consent form. The care coordinator was usually the one who determined the cognitive impairment. People admitted via fast track (stroke, coronary infarct, or hip fracture) were excluded from the CGA-Swed study [18]. For detailed information regarding the CGA-Swed study, see the study protocol [18].

Data collection

Data were collected by using a structured questionnaire with the older people during their hospital stay. In a few cases, the participants were discharged prior to their baseline interview. Therefore, a few of the baseline interviews were performed in the participants homes shortly after discharge. The researchers, registered occupational therapists, physiotherapists, nurses, and physicians, performed all the interviews and measurements at baseline. All were trained in observing and assessing in accordance with the guidelines for the specific outcome measurements.

Participant’s perceived self-determination was assessed with the statements from the Swedish Impact on Participation and Autonomy- Older persons (IPA-O) [21], that consist of a total of 22 items divided in seven dimensions and a summery item as follows: mobility (4 items), self-care (5 items), activities in and around the house (4 items), financial situation (1 item), use of time (1 item), social relationship (5 items), help and support others (1 item), and a summary item concerning My chances to live the way I want are good (1 item). The statements can be answered with totally agree, partly agree, neither agree nor disagree, disagree and totally disagree [21]. The IPA-O [21] has previously been tested for validity and test–retest reliability for people 70 years and older, showing good psychometrical properties. Cognition was measured with the Mini Mental State Examination (MMSE) [22]. For detailed information regarding measures of baseline characteristics, see the study protocol [18].

Statistics

Descriptive statistics was used to explore baseline characteristics. Prior to analysing the data, the measures of self-determination and cognition were dichotomized. Regarding self-determination, the response option totally agree was dichotomized to perceiving self-determination, and the remaining four response options (partly agree, neither agree nor disagree, disagree, and totally disagree) were dichotomised to perceiving reduced self-determination. Regarding cognition, a cut-off below 25 points was used as an indicator of decreased cognition, in accordance with previous publications from the CGA-Swed study [18, 23, 24]. Fisher’s exact test was used to test differences in proportions of perceived self-determination between people with intact cognition and people with decreased cognition. A p-value of 0.05 or less was considered significant. The Relative Risk (RR) with a 95% Confidence Interval (CI) was used to explore the risk of perceiving reduced self-determination among people with intact cognition and people with decreased cognition. All calculations were performed per protocol. Statistical analyses were performed using IBM SPSS Statistics for Windows, version 26.0 (Armonk, NY: IBM Corp, 2019).

Results

Characteristics of participants

The sample consisted of 119 frail older people with the mean age of 86 years (range 75–100 years). Of this, 59 percent were female, 65 percent were living alone, and 34 percent rated their health as good. The majority of the sample were dependent in I-ADL, and 36 percent were dependent in P-ADL. Of the 116 participants who had been cognitive screened, 45 percent had decreased cognition (Table 1). Baseline characteristics of participants are presented in Table 1.

Table 1 Baseline characteristics of participants (n=119)

Dependence in I-ADL was pronounced in participants with both intact and decreased cognition. Nearly the entire sample, regardless of cognition, was screened as having morbidity/disability (a score of 3 or more in any category, on the rating scale) (Table 2).

Table 2 Characteristics of participants with intact and decreased cognition divided in degree of dependence and morbidity/disability (n=116)

Perceptions of self-determination in people with intact and decreased cognition

A few of the participants were unable to answer all the items in the IPA-O, resulting in a few internal dropouts (Tables 2, 3, 4, 5 and 6). The majority of the participants perceived a high degree of self-determination concerning their Financial situation; 94 percent among participants with intact cognition respectively 92 percent among those with decreased cognition. A high degree of self-determination was also shown in Use of time, with 84 percent among participants with intact cognition respectively 83 percent among participants with decreased cognition. Approximately a third of the sample, i.e. both people with intact and decreased cognition, perceived lower levels of self-determination in Mobility (28 percent respectively 27 percent), and in Social relationships (33 percent in both groups) (Table 3).

Table 3 Number and percentage distribution of perceiving self-determination^a on dimension level among frail older people with intact and decreased cognition (n=116)

The relationship between perceiving reduced self-determination and cognitive functioning

The results showed statistically significant reduced perceptions of self-determination (p = 0.044, RR = 2.38) within the dimension Self-care—My chances to decide when I get washed and dressed are good (item 6), among participants with decreased cognition in contrast to participants with intact cognition (Table 4). In the dimension Social relationship—My chances to talk to people close to me on equal terms are good item (item 16), the participants with decreased cognition also had statistically significant reduced perceptions of self-determination (p = 0.041, RR = 3.71) (Table 5).

Table 4 The proportion (%), p-value and the Relative Risk (RR) with a 95 % Confidence Interval (CI) of perceiving reduced self-determination in frail older people with intact and decreased cognition (n = 116)

Table 5 The proportion (%), p-value and the Relative Risk (RR) with a 95 % Confidence Interval (CI) of perceiving reduced self-determination in frail older people with intact and decreased cognition (n = 116)

Perceptions of problems caused by health or disability in relation to cognitive functioning

No statistically significant differences with regards to perceptions of problems caused by health or disability in relation to cognitive functioning were found. In the dimension of Mobility, 82 percent of the participants with decreased cognition respectively 88 percent of the participants with intact cognition perceived problems caused by health or disability affecting their chances to be self-determined. Further, approximately 80 percent of the sample, regardless of level of cognition, perceived problems caused by health or disability affecting their chances to be self-determined in Activities in and around the house (Table 6).

Table 6 The proportion (%), p-value and the Relative Risk (RR) with a 95 % Confidence Interval (CI) of perceiving problems caused by health or disability within the seven IPA-O dimensions (n = 115)

Discussion

The present study explored the relationship of self-determination and cognition in frail older people. The results showed that people with decreased cognition had more than two times higher risk of perceiving reduced self-determination in the Self-care—people’s chances to decide when getting washed and dressed the way one wants, compared to people with intact cognition. This result suggests that older people with decreased cognition perceived that activities related to deciding when to get washed and when to get dressed was not done as they wanted and wished. From a societal perspective, this vulnerable population could be supported by having an advance care planning, with the purpose to enable them to express their wishes for the future while they still possess mental capacity. Organizing care needs according to older people’s wants and wishes regardless of having a cognitive decline or not is crucial. People should be treated as being experts in what they want from their healthcare, and healthcare professionals should be the experts in how the older people might get there [10, 11]. Care-planning meetings that take place in people’s homes enable older people’s participation and involvement in the discussions, and they were able to influence their concerns relating to the amount of care, service and the choice of provider, however they were not able to influence the way the help should be provided or organised [25]. Regardless of a person’s cognition, a care plan should outline a person’s assessed care needs, and should meet the needs of these people. The care plans should be designed and prepared to give care services the recipient understands and agrees with it. In contrast, caregivers, family members, and healthcare providers may simply take over tasks which not only robs the old people of their independence, it also affects their self-worth [26]. This is supported by a recent study [27] that identified the need to evaluate the knowledge and attitude of the caregivers of people with dementia. Providing care to this population may be burdensome and strenuous because of the complexity of multiple interacting diseases and treatments. Moreover, it is also humanly hard, because care and illness can affect peoples’ views on life, how they live, and relate to others [28]. The Patient Priorities Care aims to ensure that care plans serve rather than hinder the lives of older people living with comorbidities [10, 29]. When this is achieved, perceptions of self-determination in frail older people with decreased cognition could be possible and achievable.

In the present study, people with decreased cognition had nearly four times higher risk of perceiving reduced self-determination in Social relationships when comparing with people with intact cognition. The frail older people in the present study with decreased cognition perceived that their chances to talk to people close to them on equal terms were not achieved. Self-determination is a process of having control and rights, and it also includes having the ability and knowledge to make decisions which are determined by a person’s free choice [4]. In the present study, the findings are suggestive that older people’s ability to communicate and converse so they perceive that they are listened to, and seen as an equal was reduced when having decreased cognition. This could be due to the fact that language and cognition are closely related to each other. Previous research [30] has shown that people with decreased cognition may have language performance deficits. The language deficits can appear prior to the cognitive decline [30]. Reduced perceptions of self-determination in some social contexts and interactions could, thus, be an accumulative outcome of these deficits.

Regardless of having intact or decreased cognition, the majority of the participants in the present study perceived they were self-determined in their Financial situation and Use of time. These skills could be reasoned as not requiring language, rather require working memory and attention, which are abstract and logical. In contrast, approximately a third of the participants perceived self-determination regarding activities related to Mobility and Social relationships. A previous study [3], with people aged 65–100 years performed in the northern part of Sweden, showed that approximately 70 percent of the sample experienced self-determination in Use of time, and half of the sample experienced self-determination in Mobility. Only a third of the sample experienced self-determination in Social relationships [3]. The divergence between the findings in the present study and earlier findings may be due to the characteristics of the sample in the present study, consisting of frail older people, the majority of the sample were dependent in I-ADL, and roughly more than half of the sample was also dependent in P-ADL. Lastly, half of the sample were screened as having decreased cognition.

People aged 75 years or older were included in the present study. An important reason for choosing the age of 75 years or older was that the authors wanted to include a sample of only frail people. Including younger people would probably result in a more heterogenous sample in terms of frailty with a mix of non-frail, pre-frail and frail older people. Further, in the hospital were the CGA-Swed study [18] was performed, the hospital has as a routine to screen people aged 75 years and older with the FRESH-screening instrument [18, 20]. Only a total of 119 frail older people participated in the present study. This is a rather small sample which is a limitation, but one must keep in mind that the participant were not only old, but also frail. They were also dependent on help when performing activities of daily living (I-ADL and P-ADL), and approximately half of the sample were assessed as having decreased cognitive functioning. Achieving a larger sample with a people that is as vulnerable as the sample in the present study would not be easy.

In the present study, the sample consisted of people with intact and decreased cognition. There are some ethical issues that may arise when including people with decreased cognition, and therefore, people with decreased cognition are often underrepresented in research. One ethical issue may be that people with decreased cognition have difficulties in understanding and giving informed consent. When this was the case in the present study, next of kin signed the consent form. Moreover, partaking in several measures and answering questions may be tiring. In these cases, the researchers were observant of signs that may indicate participants being exhausted. The MMSE [22] was used when assessing cognition. This assessment was originally designed to evaluate language among other cognitive abilities [22]. By nature, the MMSE [22] assessment is verbally oriented, and when using this assessment it is important to consider if incorrect answers on the assessment could have been caused by a person’s language impairments rather than their cognitive deficits [31]. While it was not the intention of this study to explore this phenomenon, it is known that cognitive and language abilities are suggestive of a connection between aphasia; which is a disorder of language and involves a deterioration of communication skills, and the level of a person’s cognitive impairment [32]. Since both of these abilities need comprehension and communication, it is difficult to tell whether a person’s deficits are due to decreased language, or cognitive abilities, or both [33].

In this cross-sectional secondary data analysis, several data analyses were performed. However, only a few statistically significant differences between participants with declined cognition in contrast to participants with intact cognition were found. The findings could be due to chance, which must be kept in mind when interpreting the findings in the present study. Finally, this study has a quantitative design using statements from the Swedish Impact on Participation and Autonomy- Older persons (IPA-O) [21], that consist of a total of 22 items divided in seven dimensions and a summery item. No in-depth interviews focusing on the older peoples perceived self-determination within the diverse dimensions were performed. More research is thus needed focusing on frail older people with declined cognitive functioning and their possibilities and barriers to perceive self-determination in the dimensions in daily life.

Conclusions

Frail older people with decreased cognition perceived reduced self-determination in activities related to Self-care and Social relationships. Perceptions of self-determination was high both among people with intact cognition and among people with decreased cognition in the dimensions of Financial situation and Use of time. Hence, perceiving self-determination when being old, frail and having decreased cognition is possible but is dependent upon which activities that are involved. Self-determination in frail older people with decreased cognition might be viewed as dynamic, and may vary from being a utopia to being possible depending on if language and communication are part of the daily activities. Organizing healthcare needs according to the older people’s wants and wishes is crucial regardless of people having a cognitive decline or not when the effort is to enable the people to be as self-determined as they want. The frail older people with decreased cognition should be treated as being experts in their own lives, and healthcare professionals should navigate the older people to get to their desired direction.