Materials and methods

Inclusion criteria: Age more than 55 years Diagnosis of probable AD in accordance with NINCDS-ADRDA criteria or diagnosis of MCI in accordance with criteria proposed by Petersen et al. (1999).

Exclusion criteria

Positive anamnesis of stroke or precedent head traumas.

Other neurological pathologies in comorbidity.

Severe internal diseases, comorbidity with psychiatric disturbances (schizophrenia).

Positive anamnesis of alcohol or psychotropic drug abuse.

Insurgence probable period was supposed after the anamnestic investigation provided by the main caregiver.

The study followed the ethical standards of the 1964 Helsinki declaration and written informed consent was obtained from all participants before the survey. They were assured that the transcript of the interview would remain strictly confidential and that patients would not be named in the final description and analysis.

Diagnostic iter: In the study were inserted patients from our Centre that gave authorization to a clinical research participation. We enrolled familiar caregiver no-professional assistants.

Patients and caregivers: We enrolled 289 patients’ caregivers of (61.2% F) (38.8% M), mean age 74.46 years, mean M.M.S.E: 14.96, mean ADL 3.02, mean IADL 3.33, that practised a regular follow up at our Dementia Centre. We considered one caregiver for patient, with no sex difference (women 74.7%, men 25.3%). As regards the familiar role, they were mainly sons (60.2%) and spouses (32.5%). Mean age was 56.8±13.5 and the educational years level was very low (mean 9.3±3.9).

Inclusion criteria were: Age >50 years, diagnosis of probable AD according to the NINCS-ADRDA criteria (McKhann et al., 1984); on the other hand we considered as exclusion criteria a previous stroke and / or brain trauma, co-morbidity with neurological or psychiatric diseases, co-existence of severe internal diseases, history of alcohol and / or drug abuse.

All patients underwent an extensive anamnestic, neuroradiological, neurological and cognitive screening. The caregivers were submitted to an extensive evaluation using Clinical Dementia Rating Scale, Caregiver Burden Inventory, Adl, Iadl, HDRS,

Clinical evaluation: We also investigated activities of daily living (with ADL and IADL scales) as well as cognitive level (with MMSE). Activity Daily Living Scale (ADL) [11] is the most appropriate instrument to assess functional status as a measurement of the client’s ability to perform activities of daily living independently. Clinicians typically use the tool to detect problems in performing activities of daily living and to plan care accordingly. The Index ranks adequacy of performance in the six functions of bathing, dressing, toileting, transferring, continence, and feeding. Clients are scored yes/no for independence in each of the six functions. A score of 6 indicates full function, 4 indicates moderate impairment, and 2 or less indicates severe functional impairment Instrumental Activities of Daily Living Scale (IADL) [12].

IADL is an appropriate instrument to assess independent living skills. These skills are considered more complex than the basic activities of daily living as measured by the Katz. The instrument is most useful for identifying how a person is functioning at the present time. There are eight domains of function measured with the Lawton IADL scale. Clients are scored according to their highest level of functioning in that category. A summary score ranges from 0 (low function, dependent) to 8 (high function, independent) for women, and 0 through 5 for men.

Cognitive assessment: The MMSE consists of thirty items that assess orientation, short and long-term memory, language, attention, visuospatial skills, and the ability to follow simple verbal and written commands. This easy-to-use and relatively quick neuropsychological test is often employed to assess the overall cognitive status we referred to norms for the Italian population considering age and education corrections [13].

HAM-D investigates different areas for assessing the depressive state of a subject. It cannot be used as a diagnostic tool for depression, but it allows to quantitatively assess the severity of the subject’s conditions and to document the modifications of these conditions, for example during a psychotherapeutic treatment. The HAM-D consists of 21 items. The severity cut-off is ≥25 severe depression, 18-24 moderate depression, 8-17 mild depression, ≤7 absence of depression [14].

CBI [16] is a rapidly compiling scale that measures the care burden created for caregivers of patients with AD and related dementias. It is a self-report tool, which must be completed by the main caregiver. It is structured according to a multidimensional perspective. The CBI is divided into 5 sections that measure the different aspects of the care burden: Objective, psychological, physical, social, and emotional. The burden depending on the Time required for assistance (T) (items 1-5) describes the load associated with the restriction of time for the caregiver. The evolutionary burden (S) (item 6-10) is the isolation perception of the caregiver, also considering the expectations and opportunities of their peers. The physical burden (F) (item 11- 14) describes the feeling of chronic fatigue and somatic health problems while the social burden (D) examines the perception of a role’s conflict. The emotional burden (E) (items 20-24) describes the feelings towards the patient, which can be induced by behavioural disorders of the latter. Each section consists of 5 items and the score for each individual item goes from 0 (factor with minimum value) to 4 (factor with maximum value), for a total ranging from 0 to 20 for each dimension, except for the physical burden which is composed of 4 items. A correction factor of 1.25 is then applied to the total score. The range of the total score varies from 0 to 100. The scores for each section increase proportionally to the perceived severity of the burden for each area; therefore, with the sametotal score, the burden profiles may be very different. These so defined profiles will be the evaluation basis on which to build ad-hoc psycho- social interventions.

Statistical analysis: Categorical variables are expressed as frequency and percentage, numerical variables as average and standard deviation. The non-parametric approach was applied for the statistical analysis, because most of the analysed variables were not normally distributed, as occurred from the Kolmogorov-Smirnov test. Spearman correlation test was applied in order to find out the interdependence between the HDRS of Hamilton and the CBI (time loading, development loading, physical load, social load and emotional load). The same test was applied to verify the correlation between MMSE and ADL, IADL, hours of treatment and also, between, clinical dementia and ADL, IADL and treatment hours. In order to perform statistical comparison between who lives in a house and who doesn’t, in relation to numerical variable such us the HDRM of Hamilton, service hours, emotional and social load, ecc, the Mann Whitney test was applied. SPSS for Windows software, 22.0 version was adopted for all statistical analyses. A p-value lower than 0,050 was considered statistically significant.

Results

Caregiver’s examinations showed a high perception of the care load, in particular: load time (11.35±6.94), evolutionary load (11.51±5.56), physical load (9.32±5.07), social load (5.86±5.43), and emotional load (2.89±3.26).

Looking at the results obtained from the correlation between HDRS and time loading, we find the existence of a significant and negative correlations between the HDRS scores and all individual time load factors (TD1: rs=-0.267, p<0.001; TD2: rs=-0.172, p=0.003; TD3: -0.203, p=0.001; TD4: rs=-0.275, p<0.001; TD5: rs-0.224, p<0.001); there are significant and negative correlations between HDRS scores and all dimensions of development burden (S6: rs=-0.192, p=0.001; S7: rs=-0.231, p<0.001; S8: rs=-0.210, p<0.001; S9: rs=-0.176, p=0.003; S10:- 0.144, p>0.001); there are significant and negative correlations between HDRS scores and only two physical load sizes (F12. RS=-0.149, p=0.010.01; F1=0, and, therefore, only two dimensions of social load (D15: rs=-0.146, p<0.001; D16: rs=-0.121, p=0.039) and, finally, three dimensions of emotional load, of which one negative (E20: rs=-0.255, p<0.001) and one positive (E23: rs=0.146, p=0.013). When the depression HDRS index goes up drops the indicator of sociability. As HDRS depression increases, the E20 (emotional burden) index decreases, while E23 increases.

In addition, we found that MMSE and clinical dementia were significantly and negatively related (rs=-0.847, p<0.001) while there is a positive correlation between MMSe and Hamilton HDRS (rs=0, 261, p<0.001), ADL (rs=0.800, p<0.001), IADL (rs=0.792, p<0.001) and hours of care (rs= 0.783, p<0.001). Clinical dementia has been negatively correlated with HDRS Hamilton (-0.272, p<0.001) ADL (rs=-0.748, p<0.001) and IADL (rs=- 0.724, p<0.001) and positively correlated with hours of care (rs= 0.733, p<0.001) and positively correlated with ADL (rs=-0.706, p<0.001) IADL (rs=-0.711, p<0.001) and Hamilton HDRS (rs=- 0.262, p<0.001). The Mann Whitney test (Table 1) allows us to highlight that there are statistically significant differences between those living at home and those not living, with reference to some variables: in particular, those living at home show significantly higher scores with respect to service hours, time load, development load and physical load. There were no significant differences between the two groups regarding HDRS, social burden and emotional burden.

Table 1: Absolute frequencies and percentages for categorical variables.

Table 2: Descriptive statistics for numerical variables.

Table 3: Comparison between caregivers living at home vs not living at home.

Table 4: Spearman’s correlation between MMSE and CBI (partial and total scores).

0.792, p<0.001) and hours of care (rs= 0.783, p<0.001). Clinical dementia has been negatively correlated with HDRS Hamilton (-0.272, p<0.001) ADL (rs=-0.748, p<0.001) and IADL (rs=- 0.724, p<0.001) and positively correlated with hours of care (rs= 0.733, p<0.001) and positively correlated with ADL (rs=-0.706, p<0.001) IADL (rs=-0.711, p<0.001) and Hamilton HDRS (rs=- 0.262, p<0.001). The Mann Whitney test (Table 1) allows us to highlight that there are statistically significant differences between those living at home and those not living, with reference to some variables: in particular, those living at home show significantly higher scores with respect to service hours, time load, development load and physical load. There were no significant differences between the two groups regarding HDRS, social burden and emotional burden.

All of dimension on social burden (except for D18) are significatly and negatively related with MMSE.

Finally , only one of the dimension related to emotional burden, the E20, turns out significantly and negatively related with MMSE, and als the total emotional burden (p<0.001 for both). Other dimensions are not statistically significant (p>0.050).

Discussion

To take care of the patient are mainly sons (60.2%) and the partner (32.5%), middle-aged 56.8±13.5 years, little educated (9.4±3.9 anni). The 76.8% of the interviewed live with sick family member, of those 65% is conjugated. Whit the 74.7% women are the highest percentage of caregivers, significantly younger than men (p<0.01), mainly house wives (p<0.05), able to devote more hours of the day to the care of their family members than men (p<0.001). However, the average stress load, measured by the CBI score, in the two sexes was not significantly different.

The patients are 177 women (61.3%) and 112 men (38.7%) of average age 74.4 6 and schooling 7.5 3.9. Classifying patients according to their MMSE scores, according to the cut-off of the neuropsychological scale, we see that 56.4% of the sample has moderate to severe impairment, and 15.9% mild impairment. Regarding the scales that measure independence in carrying out daily activities, we have that the average score of ADL is 3.0 1.9, while that of IADL is 3.3 2.4. No statistically significant difference between the two sexes, for any clinical scale, was found.

The results show strong correlations between CBI scores and clinical patient scales (MMSE, ADL, IADL). Going to look in more detail we see that the highest correlations are with the first 3 load dimensions (objective, evolutionary, physical), while the other two dimensions correlate slightly.

The stress of the family members is influenced by all 5 dimensions of the CBI, but it seems that the objective load is that of greater weight. The age (of the caregiver) and, in particular, the hours of daily care are also significant predictors.

Moreover, Kim et al. (2011) reported that compromise in ADL and IADl tests represent the most difficult part in the burden of caregivers with general dementia. In this study, IADL was the third most important variable to explain the variance in the load of the caregiver, while ADL did not show a significant change in variance. Difficulty with IADLs management seems to be very common in patients with AD, as these tasks include complex tasks and tasks such as cleaning and managing medications [18].

In this study women tend to experience a major support burden than males; the marital relationship and the hours of assistance, contribute to the perception of burden of care.

Studies in the literature report a four times greater risk of depression in the caregivers of the spouse than the controls [19,20]. In their studies focus on how with the evolution of the disease, require a greater need for care that leads to an outward relational closure and a stronger emotional attachment to the patient, with consequent burden of care for the caregiver. These studies are agree with the results of our research. In this analysis, time spent on caregiving activities was significantly associated with the level of caregiver burden.

When the time spent, caregiving increased to more than 8 hours, the burden score increased significantly and is greater in caregivers living at home with the patient.

Studies have shown that the total number of hours of care is strongly correlated to the level the lack of self-sufficiency of the patient; the functional decline of the patient can increase the hours of care and the stress of the caregiver [21,22].

In this study, caregiver’s age is an indirect determinant of burden as older adult caregivers experience physical vulnerability in terms of an increasing number of diseases.

[23,24] have found that the age of the caregiver can be a nondirect factor of the burden as older adults who are also caregivers experience a physical vulnerability in terms of even more diseases. Health has been reported as an important variable in previous studies on loading and has been shown to significantly increase the psychological discomfort of the caregiver.

Conclusion

The experience of caregivers is in connection with the evolution of the disease and has a strong incidence in their choices and in their personal lives. Due to the characteristics of the degenerative course of the disease, caregivers experience a daily psychophysical decline in their loved one [25].

The care that the caregiver provides to patients with Alzheimer’s disease undermines their physical health and psychological well-being; this leads to the development of negative effects on quality of life [26,27].

Many studies have highlighted the so-called caregiver burden, a condition that is characterized by psychophysical manifestations that can lead to a deterioration in physical health resulting in a decrease in immune defenses, emotional exhaustion, development of anxiety. With the progression of the disease the weight of the situation management increases, as the evolution of cognitive disorders, the decrease in daily life and the non-cognitive symptoms of the patient with Alzheimer’s feed the discomfort, anxiety, depression of the caregiver [28,29].

The scientific literature confirms that supporting interventions are important to reduce anxiety-depressive symptoms and stress in the caregiver, but they are also effective for increasing general well-being. These interventions have positive consequences for the quality of life of the family member with dementia [30,31].

Scientific literature has shown that individual interventions are more effective in reducing perceived stress, because they are adapted to the specific needs of the caregiver; instead, group interventions diminish the perception of social isolation that caregivers feel. Psycho-educational, psychotherapeutic and multidimensional interventions show positive effects on depression and anxiety in the short term, managing to maintain these benefits up to seven months after the end of the surgery [32].

In addition to supporting interventions aimed directly at the caregiver, it is important to report services on the national territory whose purpose is to provide relief from the high burden of care that is required. These include ‘Relief Centres’, day care centres and home care [33,34].

Another very important aspect in the support of caregivers is given by the Associations that give information at national and local level, emotional support, practical advice, support groups and training programs to help people with dementia and their families. It is good that the caregiver participates in these types of interventions not only in situations of burden, but also as a form of prevention already when you become aware of the diagnosis of dementia of your family member [35-37].

Psychotherapists must be aware of their intrusion in a system which balance is threatened by the disease-driven change. This involves a painful anticipation of the loss both in the patient and in the caregiver with a wide range of intense emotions and complex interactions [38].

“If, on the one hand, without memory there is no self, on the other, whoever is not recognised by their beloved after a life together, runs the risk of feeling deprived of their relationship and of their emotional background”. Professionals therefore have an ethical duty towards patients and their families.

The analysis of the real needs allows us to deal with the several ethical questions arising in the course of the illness, in compliance with the principles of: Independence-self-determination, charity and social justice. Nowadays it seems that a person affected from dementia has no dignity. A human being, as a “person”, possess an original dignity in any phase of his/her existence. A person is not only a “cognitive” being and a patient with dementia is still a “person”, therefore in any kind of relationship with him/her we have to acknowledge this dignity [38].

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