NEEDS ASSESSMENT OF ALZHEIMERS’ FAMILY CAREGIVERS:
THE AIMA STUDY.

 
Ferrario E., Massaia M., Ponzetto M., Gambina G., Guala A., Spadin P.

 
Geriatric Section, Department of Medical-Surgical Disciplines, University of Torino.
Department of Neurology. Azienda Ospedaliera di Verona, O.C.M.
Geriatric Department, ASL 12, Biella.
AIMA (Associazione Italiana Malattia di Alzheimer)

A) METHOD

The collection of data has been performed by direct interview using a semi-structured questionnaire. The results have been processed by means of computerised statistical analysis in order to find the prevalence of specific items in the sample.

The following items were included in the questionnaire for needs assessment of family caregivers. No guidelines or instructions have been written because the interviewers were specifically trained.

DEMOGRAPHIC  DATA: 
·  birth date
·  gender
·  education (years)
·  marital status
·  relationship with patient

WORKING ACTIVITY:
·  type of activity (checklist)
·  hours spent in activity

SELF-RATED HEALTH:
·  good/fair/average/poor

ASSISTENTIAL BURDEN:
· living with patient
· duration of patient’s dementia
· duration of the caregiving activity
· hours spent for the care of the patient
· type of care given to the patient:
 - hygiene
 - preparation and administration of meals
 - administration of drugs
 - surveillance and/or company indoors
 - surveillance and/or company outdoors
· activities (among those listed) more demanding for the caregiver
· most difficult problems experienced in the care:
 - need for complete physical care, related to dependence in activities of daily living
- continuous need of surveillance
- consequences of the care on caregiver’s physical and mental health
- difficulties in going out
- difficulties in getting free time for leisure activities
- economic problems
- difficulties in finding help from other relatives
- difficulties in finding help from public services
-  limitations in social relationships
- negative consequences of the caregiving on relations with other family members
- other........

SUPPORT FROM RELATIVES:
· help in the care
· psychological support
· help in decision making

INFORMATION ON THE DISEASE:
· knowledge about natural history
· knowledge about availability of services
· source of information

INDICATION OF USEFUL SERVICES:
· out-patient services
· home visits by health staff
· hospital admission
· day hospital
· day centre
· integrated home health care (GPs, SRNs)
· home help
· nursing home
· support group for caregivers
· economic support
· other........

WISH FOR INSTITUTIONAL CARE:
· temporary (respite admissions)
· permanent (institutionalization)

The participants were members of 12 sections of the Italian Association of Alzheimer Disease (AIMA): Aosta, Biella, Campobasso, Crema, Cremona, Firenze, Mantova, Novara, Parma, Roma, Torino, Verona.

The interviews were performed by medical doctors specifically trained for this research. They were all involved in the geriatric field, and the training allowed a standardised collection of data.

The participating caregivers were 486. Complete data were obtained for 423 subjects.

B) DEMOGRAPHIC  AND GENERAL DATA ON THE PARTICIPANTS 

Mean age of the caregivers is 57.8±13.8 years, ranging from 23 to 94 years. Approximately a quarter of them are 70 years of age or older. The patients they have to look after are 65.8% women, mean age 73.3±8.9 years, ranging from 50 to 85 years.

Among them 71.5% are women. The majority of caregivers are married (82.1%). 
About 40% of the caregivers have completed the primary school, while 52% of them have attended secondary school and 8.5% are graduated. One third of the caregivers are employed for an average of 5 to 8 hours per day, while 68% is free from outdoor working activities (retired or housewifes).

The relationship with the patient is as follow: spouse 47.2%, child 39.1%, sister/brother 4.1%, other 9.6%. 

As a mean, the patients have been affected by dementia for 3.9 years. One third of them are ill since five years or more. 

Most caregivers have been following the patients almost from the onset of  symptoms (mean 3.1 years).

Most (about 88%) of family caregivers live with the patient. All caregivers are caring for patients living at home. 
 

C) RELATIONSHIP BETWEEN CARER AND PATIENT / ATTITUDES TOWARD THE SITUATION /  MOTIVATION

The majority of caregivers experiences a moderate degree of stress. The increase of stress is accompanied by depressive symptoms. There is a correlation between degree of stress and advanced age of the caregiver, who himself suffers from multiple diseases. With advancing age, physical and psychological resources in face of difficult situations tend to decrease even in healthy people.

The relationship with the patient has worsened during the course of the disease for 65% of the caregivers. The emotional aspects of the relationship rarely changed over time although the communication is often severely altered.

The caregivers report as main problems in performing the activity of daily living the following: unable to dress himself  (65.1%), unable to wash himself (62.7%), unable to use toilet (40.2%), problems with wandering (35.2%), eating (26.7%), difficulties in walking (25.6%). Most patients are still able to perform some of these activities but difficulties arise for the concomitance of problems in communication (59.1%) and lack of collaboration (55.7%).

For the the caregivers the main burden in terms of time is  supervision (around 12 hours per day). About 4 hours per day are spent for personal hygiene and cleaning, preparation and administration of drugs. Three to four hours per day are spent in bringing the patient outdoors. 

The direct involvement in the care is very high for spouses (about 19 hours per day as a mean). Other relatives are less intensively involved (e.g. children, 9 hours per day as a mean), and the burden is probably shared with professional caregivers (about 9 hours per day on average).

Only 30% of the caregivers report as difficult task to handle the need of complete physical care of the patients.

D) EXPERIENCED BURDEN FROM BEHAVIOURAL PROBLEMS WITH PATIENTS

The burden experienced by the caregivers is mainly related to patient’s restlessness (58.8%), sleep disturbances (42.2%), delusions (37.3%), wandering (35.2%), aggressive behaviour (25.1%) and dangerous behaviour (16.6%).

The most difficult problems to handle in caregivers’ opinions are sleep disturbances (65.2%), dangerous behaviour (60.5%), mood disturbances (38.4%), cognitive problems (24.7%).

The carers deal with these problems mainly by spending many hours per day for supervision. Moreover they receive help from health care staff through outpatients consultations or day hospital admissions. The approach is overall successful since only 12% of them have requested nursing home admission for the patient.

The need of continuous supervision is identified as the most difficult problem by 61.4% of the caregivers. A much lower impact have the need of complete physical care for the patient (30%), difficulties in finding help from other relatives (20.7%), difficulties in finding help from public services (17.6%), economic problems (11.7%).
Besides the huge amount of problems faced by caregivers, more than 80% of them wishes to continue the caring activity at home, and as much as 40% states to have never thought of temporarily admitting the patient into an institution.
 
 

E) EXPERIENCED BURDEN FROM THE EMOTIONAL IMPACT OF CAREGIVING

The emotional impact of caregiving in our sample rarely (7%) produces feelings of guilt because of the very deep involvement in trying to meet every need of the patient.
More than one third (38.4%) of caregivers experiences feeling of anger at the situation.

In our sample 36% receive very rare or no visits from relatives or friends. Feelings of loneliness and isolation are present in  65.2% who state that their social life has being severely curtailed by caregiving.

There is a direct correlation between degree of stress and both time spent in supervising activities and level of patient’s physical impairment.

In our sample the problem of dealing with alienation, loss and death is not very relevant probably due to Italian cultural background and the choice of caring for the patient at home.

The large majority of caregivers takes care of patients because of affective ties, therefore they don’t expect anything in return.

In our  sample the most relevant determinants of perceived burden appear to be the psychosocial consequences of care more than the management of the patient himself. In fact, the main reasons for request of institutional care are in the first place the need of  too many hours (20.7%) of care, and only secondarily the behavioural problems of the patient (6.2%).

F) CAREGIVERS’ HEALTH STATUS

Most caregivers rate their health as good (38.3%) or fair (40.2%), but 22% of them describe their health as poor or bad, and have requested 2 or more medical visits in the previous two months.

About one third (28.3%) of our sample states that his/her health status has somehow changed while caring for the patient.

A severe degree of insomnia is reported by 14.7% of caregivers. Somatic problems such as fatigue, backache, muscolar pain are reported by 43.7%. Loss of appetite is present in 14.2% of subjects and in 4.7% it is accompanied by a significant loss of weight.

G) INDIVIDUAL RESOURCES: CONCRETE THINGS THAT THE CAREGIVERS DO TO HANDLE THE SITUATION

The majority of caregivers deals with the issues of burden through deep personal involvement in all aspects of care.

The most difficult situations are handled with the help of  health staff. In particular in our sample 90% of the caregivers contacted a day hospital or GPs while only 5% used home care and 5% respite admissions. These low percentages are due to a still low diffusion  of these services in Italy.

One third of our caregivers asks for home help for domestic activities and for outpatients consultations. About a quarter requests home visits by health staff and day centres. Economic help is wished by 26% of the caregivers, while about 20% are interested in support groups. Hospital care is requested by 14% of them. Only in 12% of cases there is a request for nursing home admission. Respite admissions are requested by 22% of the interviewed caregivers.

Absolute lack of  free time is stated by 37% of the caregivers,while 25% of them use their free time in performing domestic activities. Only 21% organizes its free time for leisure and hobbies. As many as 85% of the sample have problems in going out for holidays. The difficulties in getting free time for leisure activities are stated as one of the main burden by 55.7% of subjects.

H) SOCIAL SUPPORT

About 45% of caregivers are helped  by other relatives and may receive satisfactory support from them in case of need. Actual help from relatives is not received by 23% of the sample, and 16% do not expect any help even in case of need.

A share of opinions with other relatives on main issues regarding the patient is possible for 71% of caregivers and 86% of them are helped in taking important decisions.

Only 38% of patients are actually receiving the economic subsidy allocated by the government for severely disabled subjects. The expenses for management of the disease affect  the economic budget of caregivers in about 50% of the cases, partly because of lack of economic help from society, partly because of the reduction in outdoors working activity induced by the care needs.

The situation of giving care impairs the relationship within the family in only about 20% of cases. Social relationships in general  are changed in 51% of caregivers.

I) PROFESSIONAL SUPPORT / INFORMATION

The caregivers contacted by interview were all members of AIMA, and therefore sensitive on information issues.

In fact, about 70% of them feel to be sufficiently informed on problems related to the disease. The information has been provided by medical staff in 41% of the cases and only in 6.2% by media.

More than half of the sample thinks of  being well informed about availability of services for the patients. Also in this case, the information has been given by medical staff in 37% of the cases, and in 5.2% by media.
Only 30% of the caregivers ask for more information about the disease and the available services.

A significant help from professional staff has been received by the majority of the caregivers, mainly in terms of medical advice.

The interviewed sample is satisfied with medical support. They need more home help and intermediate health services such as day centres and respite admissions.
One third (30%) of the caregivers gets support from self-help groups since two years as a mean. Our caregivers are all members of AIMA.