Predictors of unmet needs in Chilean older people with dementia: a cross-sectional study

This was a cross-sectional study with a non-probability convenience sampling. One-hundred and sixty-six informal caregivers and their relatives with dementia were interviewed. Initially, 288 potential participants were approached. Out of these, 35 persons were excluded because they did not meet the inclusion criteria as follows: 13 had been institutionalized, 8 did not meet the criteria for dementia, 3 were younger than 60 years old and 11 had died, leaving a total of 253 people suitable to be included in the study. Out of these, 39 could not be reached by researchers and 9 were too confused when contacted by phone that they could not consent to be approached in person. Of the 205 remainder, 39 refused to take part in the study. Some of the reasons for refusing included not wanted to be bothered, not receiving any direct benefit from participating, or reason not known (Fig. 1).

Participants were contacted from different organizations, enrolled through advertisement or referred by a neurologist. The inclusion criteria for informal caregivers were: consider themselves as principal caregivers and not being receiving any formal payment as a caregiver. Criteria for PWD were: being 60 or over, diagnosed with any type of dementia by a physician and being living at their own homes. This research was approved by the Bioethical Committee of the Faculty of Medicine, Universidad de Valparaíso.

All interviews were carried out either, at PWD’s or caregiver’s homes. Once there, the interviewer answered any queries and tried to obtain informed consent as follows: a written consent by signing a consent form was required from PWD and their caregivers. Some persons with dementia were unable to provide written informed consent. When this occurred, the interviewer obtained caregiver’s consent and also sought the person with dementia’s assent. During this process, the interviewer made sure that he/she had taken as much time and care in explaining the information about this research as simply as possible. The interviewer avoided using long sentences and attempted to reduce any distractions. To find out if the participants have understood the information given, the interviewer observed their ability to ask any relevant questions and also requested the participant to repeat back the information and how it would relate to them. In addition, the interviewer clarified any doubts about the study and reiterated about the right to withdraw at any time.

Whenever possible, the person with dementia and the caregiver were interviewed separately. Only few caregivers wanted to be present at PWD’s cognitive impairment assessment (11%). Interviews were terminated immediately in presence of any sign of discomfort. Using standardized instruments, PWD were interviewed about their cognitive status. Caregivers were interviewed about the PWD’s sociodemographic details, needs, behavioral and psychological symptoms and functional status. In addition, caregivers were assessed about their own sociodemographic details, depression, anxiety, burden and social support. This interview took about 1 h and a half. The interviewer started the assessment reminding participants what the interview was about and answering any questions they might have. After that, informed consent was sought according to the procedure stated above. There was no particular order to administer the instruments, but usually the interview with the caregiver started with the instrument for assessing needs (CANE).

It is important to mention that the data for this study was collected previous to the recent pilot implementation of national policies regarding PWD’s care.

A statistical analysis was performed with IBM SPSS Statistics 21 software package [31, 32]. Descriptive statistics were carried out to assess demographic information and characteristics of met/unmet needs (mean, standard deviation, range and frequency in percentages). The factors associated with unmet needs were analysed using Spearman correlation. Mann-Whitney test was done for the variables caregiver’s sex and PWD’s sex and Kruskall Wallis test was performed with the variable “relationship with the PWD”. All analyses were carried out at significance level of p < 0.05 and p < 0.01. In addition, a stepwise multiple linear regression analysis was done to determinate the predictors of unmet needs of PWD. The dependent variable was the unmet needs of PWD and independent variables were PWD’s functional status, and caregiver’s social support, burden, age, relationship with PWD, anxiety and depressive symptoms.

Demographic and clinical characteristics of PWD are shown in Table 1. The age of PWD ranged from 63 to 108 years (M = 80.3, s.d. = 7.9). There were 66.7% of women and 33.3% were men. A similar percentage of PWD were either married/with partner or widowed (48.8 and 47.6% respectively). Related to the educational background, 40.2% of older adults with dementia did not complete primary school.

The results of the mini mental (MMSE) showed that 18.9% of them had severe cognitive impairment, 55.9% had moderate and 25.2% had mild cognitive impairment. The results of the Barthel Index showed that 18.4% had total dependence, 14.7% severe dependence, 12.9% moderate dependence, 44.7% mild dependence and 9.2% were autonomous. Finally, the most frequent behavioral and psychological symptoms were depression/dysphoria (79.9%), anxiety (72.6%) and apathy (69.5%).

Table 2 shows demographic and clinical characteristics of caregivers. The mean age was 57.6 (s.d. = 14.5) and ranged from 22 to 96 years. Most of the participants were women (81.9%) and have a spouse/partner (66.9%). Around 55% were a son/daughter and 28.3% were spouses of the PWD. Regarding the clinical characteristics of caregivers, 68.9% (95% IC = 61.5–75.2%) presented intense burden, 60.7% (95% IC = 53.4%-68–1%) had depressive symptoms and 66.9% (95% IC = 59.5–74.2%) of them had anxiety symptoms.

The mean of total number of needs was 13.3 (s.d. = 4.52; range 0–25) and out of these 10 were met needs (s.d. = 3.86; range 0–20) and 3.3 were unmet needs (s.d. = 2.82; range 0–13). The frequency of CANE met and unmet needs by area are shown in Tables 3 and 4. The most frequent met needs of PWD were found in the environmental area: “Money” (82.5%), “Looking after home” (81.3%), “Food” (78.9%). Some physical needs were also mostly met, such as “Self-care” (75.3%) and “Physical health” (57.2%).

The most common unmet needs were social and psychological, such as “Daily activities” (39.2%), “Company” (36.1%), and “Memory” (34.9%); followed by “Information” (27.1%) and “Psychological distress” (21.1%).

Table 4 shows there  was a significant relation between low level of caregivers’ social support and more unmet needs in PWD (r_s = −.383; p < 0.01). Moreover, caregivers who were children of the PWD (K-W = 7.307; p < 0.05) and younger (r_s = −.216; p < 0.01) reported higher number of unmet needs. Additionally, high levels of caregivers’ burden (r_s = .372; p < 0.01), depressive symptoms (r_s = .354; p < 0.01) and anxiety symptoms (r_s = .260; p = 0.01) were related with higher number of unmet needs in the person with dementia. The only factor of the PWD related with unmet needs was functional status. Higher dependence in the PWD was associated with higher number of unmet needs (r_s = .177; p < 0.05).

A stepwise multiple linear regression analysis was carried on to determinate which of the factors were the best predictors to unmet needs (Table 5). The dependent variable was the number of unmet needs of PWD (reported by their caregivers). The independent variables were PWD’s functional status, caregivers’ age, social support, burden, anxiety and depressive symptoms and their relationship with PWD. Low social support (p < 0.01), high levels of burden (p < 0.05), younger caregivers (p < 0.05) and caregivers’ anxiety symptoms (p < 0.05) were predictors of higher unmet needs of PWD (F = 11.629; P < 0.01; R² = 23%).

Social support and anxiety symptoms were the independent variables with the highest explanation power (β = − 0.163; β = 0.122, respectively). Multicollinearity was no present within the model.

In line with European samples where caregiver reports on the CANE were used, in our study, the most common PWD’s unmet needs, reported by caregivers, were found in the areas of daytime activities, company, psychological distress and memory [10, 33‐36]. This result is consistent with a recent review about PWD’s needs which pointed out that the most frequent unmet needs in this group are the same across countries irrespective of different supply and functioning of services [37]. In addition, in our sample, the mean number of unmet needs was higher than the average shown in most of European studies [10, 35, 36]. This could be reflecting both, a lower provision of services and the fact that most of caregiving assistance relies on family caregivers, consequently resulting in a higher number of unmet needs. Regarding this, it is important to mention that, in order to meet PWD’s and caregiver’s needs, Chilean public policies about dementia should try to address issues that currently are challenges for services in developed countries such as, adequate availability and timing, personalized and flexible offer, appropriate information and coordination, etc. [37].

The study showed that the most relevant met needs of PWD were related to the environmental and physical areas of dementia. These results are consistent with previous studies in high income countries, which revealed that basic needs of PWD are usually covered (food, home, personal care and physical health) [10, 35, 36]. A possible explanation is that those types of needs are easily identifiable and in most cases can be met by family caregivers without any additional support. In contrast, higher numbers of unmet needs were found in social and psychological areas. Considering caregivers’ own burden and their mental health deterioration, providing PWD with daily activities to perform, information about their condition, help with memory loss and also company and support to psychological distress, could be aspects difficult to address. Usually, approaches to address dementia in Public Healthcare System are focused on older people’s physical health, however, several studies have pointed out the relevance of psychosocial aspects in PWD [8, 38]. The implementation of day-care centres for older adults with dementia is a relevant initiative to acknowledge the lack of activities and social isolation in this group. These centres not only improve the quality of life of PWD, through the development of social and physical activities in a safe environment, but also have a positive impact on caregivers by giving them respite time and consequently decreasing psychological distress [39, 40]. In Chile, this type of centres is recently being piloted in few cities of the country, and its number is expected to grow as long as they are included in the future National Care System.

According to the results of this study, unmet needs of PWD were predicted only by caregivers’ factors. Our two hypotheses were confirmed. Thus, caregivers’ higher level of anxiety symptoms and burden, low perceived social support and younger age were related to a higher number of unmet needs in people with dementia. Different studies of Chilean caregivers of PWD have shown they have intense burden and high levels of depressive and anxiety symptoms [6, 41]. It is not surprising that caregivers with these mental health characteristics were not in good condition for both, performing caregiving tasks and addressing unmet needs of those who they look after to, particularly in the psychosocial area. In Chile, most older people expect being cared for by their families [42]. In addition, worldwide, it has been encouraged that, in order to have better health outcomes, older adults should stay at home for as long as possible [35]. However, this can be achieved only under the presence of a health and social care system which provides strong support for PWD and their caregivers. In Chile, a relevant initiative targeting this matter is being piloted, a new public programme called “Chile Cuida” (“Chile Provides Care”). This programme intends to give some relief to informal caregivers, to create new jobs and to promote better conditions for older people to stay in their own households. People who live within the family caregiver’s neighborhood or community are trained to become a formal caregiver, making them capable and formally prepared to provide assistance to PWD in their households twice per week for 3 or 4 h a day. This visit gives respite to family caregivers who also have the opportunity to participate in workshops with health professionals, training sessions or recreational activities [34]. In addition, the National Dementia Plan has been recently launched by the Minister of Health and is starting to be piloted in few cities of the country. This policy aims to address psychosocial aspects of dementia, for example, through the implementation of day-care centres across the country, improving the coordination between primary and secondary health and giving treatment to the PWD-caregiver dyad. [9].

Caregiver’s age was also found to be a predictor of PWD’s unmet needs. Younger caregivers are usually daughters of PWD who already have multiple responsibilities. It has been found that younger caregivers usually have to take care of their own children, comply with professional duties and social life events. Additionally, they tend to experience less feelings of reward from being a caregiver and show higher levels of burden compared to older caregivers [43]. These issues add difficulties to meet PWD’s unmet needs.