"I feel guilty, maybe I am not doing enough for my sick ..."
"I do not feel understood by anybody ..."
"I feel only to address problems larger than me ..."
"I can not accept the bad thoughts that come to my father ... I am a monster, because I know that is sick!"
"How can I decide to devote more time to my sick mother when the time sottraggo it to my children?"
"I can not never tell what I feel because I feel that others judge me"
These are some of the screams of aid collected in interviews with family members suffering from Alzheimer's disease.
What is the help asking?
Ask to be heard and to be able to speak ... Not to be judged ... You can express emotions and feelings, sometimes negative ... To be supported in finding solutions and personal "potercela do" to address fears and anxieties of which we can not or you can not talk to anyone.
All these demands are a real emotional and psychological needs that make the life of the family of the patient so dramatic that of the same patient. These needs range from emotional and moral support, to the need for family counseling, need to be supported in the most critical steps to be accompanied to the time of the loss of their beloved; dall'imparare to recognize their needs, namely to have time in itself, all'imparare to look and listen.
The groups of mutual aid of auto alzheimer Pordenone arose in seeking to respond to these needs by involving himself in precisely the providers of family support. The groups of auto mutual aid are a valuable tool to support the family during the course of the disease, follow the various stages and help to address some of the most dramatic of this disease as the acceptance and understanding of the disease, the change of roles, the development of mourning, the analysis of the sense of guilt ... of the reasons ... choices ...
What are the groups of auto loan help?
* There are groups of therapy and are led by a conductor and an observer who is to "facilitate communication" between the participants, to provide incentives for the comparison and regulatory meetings
* They are often small groups (eight to ten families) who meet every two to four weeks to set a course of 10 meetings
* Tackle issues closely related to Caregiving alzheimer's disease
What are the family in self-help groups?
• within the groups of self-help family members find friendship, solidarity and sharing of problems, as well as the necessary expertise to deal with issues "so difficult".
Family members of Alzheimer patients often come to self-help groups after several individual meetings with the volunteers of the preparations: their is a take-over total, a step by step with deadlines, which helps them to feel just ahead of this disease. It 'very important that those who participate in self-help groups is really motivated to do so, for each participant is asked to share their feelings and their own emotions and be able or want to hear those of others.
What results?
* Improving the perception of the self (the family)
* Ability to express emotions
* Knowledge of the disease and of course
* Decrease in feelings of guilt and inadequacy
* Control of negative feelings
* Best communication with the patient
* Best responsibility in helping
* Improvement of social relations: the group becomes important part of life and relationships.
The aim of the group is "to treat those who care" by easing the isolation and stress, the environment, increasing the opportunity to look at their problems from different angles through the comparison with others and leading to bring on itself a part of all the attention devoted to the sick, all in order to teach them to regain or maintain the energy and health.
The second group who leads ...
Who leads the self-help groups is not "the expert" who recognize the problems of others, consider the feelings ... and criticize, the task of collecting all that is clear, giving space to any new idea safeguarding rules bases of the group:
* Times
* Attendance
* Mutual respect
* Attention to weaker
The operator must ensure the identity of the group, trying to do as much as possible to remain a point of reference stable and secure for people to seek help and support.
I conclude with a sentence of Martin Gray says that "what man has certain needs in times of distress is not a cry of pain, but a more powerful voice of his return that the courage"
The self-help groups give voice and courage to these families and give them the opportunity to continue to fight without feeling the sun ...
Friday, January 9, 2009
Aid groups
The Alzheimer's Association were born in the 80s in many countries around the world. Provide educational materials for caregivers and professionals, sponsoring research and services at regional and state also support research on the causes, prevention and treatment of this disease.
In Italy, there are two major national associations that engage in dementia of Alzheimer: Alzheimer Federation Italy and the Italian Association of Alzheimer's Disease (AIMA).
Both associations were created with the aim of raising public awareness and the institutions on the problems and rights of people with Alzheimer's and their families, through information campaigns, conferences, symposia, debates, publications.
Other business activities of the Association are:
* Deepening new issues of work, searching and also importing foreign experience;
* Training of personnel;
* Preparation of volunteering;
* Treatment and rehabilitation of behavioral interventions and environmental issues;
* Support groups for family members (in addition to this activity there is a policy designed to assert the rights of patients and family members).
In recent years have been set up several sections at the local level that are working jointly on the territory of the institutions, sensitized, with the objective of addressing the practical problems and direct local aid to families with the resources available.
In Italy, there are two major national associations that engage in dementia of Alzheimer: Alzheimer Federation Italy and the Italian Association of Alzheimer's Disease (AIMA).
Both associations were created with the aim of raising public awareness and the institutions on the problems and rights of people with Alzheimer's and their families, through information campaigns, conferences, symposia, debates, publications.
Other business activities of the Association are:
* Deepening new issues of work, searching and also importing foreign experience;
* Training of personnel;
* Preparation of volunteering;
* Treatment and rehabilitation of behavioral interventions and environmental issues;
* Support groups for family members (in addition to this activity there is a policy designed to assert the rights of patients and family members).
In recent years have been set up several sections at the local level that are working jointly on the territory of the institutions, sensitized, with the objective of addressing the practical problems and direct local aid to families with the resources available.
The host of the Alzheimer's patient and his family: treating or caring?
An anonymous author wrote: "A real voyage of discovery is not seeking new lands, but having new eyes."
An anthropological approach can help us understand how to improve the quality of services or, better yet, create a service tailored to the needs of patients and their family: Martha Rogers (1970) at the heart of the person as a whole, as a All that integrates unified with the environment, from this point of view, the better the service or care (as reflected in the guides to nursing, care literally) contrasts with the treatment or cure, which is implicit in the idea of healing and material assistance.
Alzheimer's disease in my opinion, I believe that we can speak of care rather than cure. The care is a particular quality of personal relationship with the sick person. Caring involves understanding the lifestyle and state of health of the person you are seeing with specific and targeted.
The "care" is an attitude, a relational manner, a way of life that means attention to recognize and respect the person in his being, accepting its properties, its ways, his memories and affections needs.
A take-over involves a continuity of action in time and in the professions, and above all involves the need to give more information in order to create a language and a common mode of action.
An anthropological approach can help us understand how to improve the quality of services or, better yet, create a service tailored to the needs of patients and their family: Martha Rogers (1970) at the heart of the person as a whole, as a All that integrates unified with the environment, from this point of view, the better the service or care (as reflected in the guides to nursing, care literally) contrasts with the treatment or cure, which is implicit in the idea of healing and material assistance.
Alzheimer's disease in my opinion, I believe that we can speak of care rather than cure. The care is a particular quality of personal relationship with the sick person. Caring involves understanding the lifestyle and state of health of the person you are seeing with specific and targeted.
The "care" is an attitude, a relational manner, a way of life that means attention to recognize and respect the person in his being, accepting its properties, its ways, his memories and affections needs.
A take-over involves a continuity of action in time and in the professions, and above all involves the need to give more information in order to create a language and a common mode of action.
The support network for patients and their families
Statistics from 1999 show an alarming development of support services for patients with Alzheimer's and their families. Currently in our country most of the care falls on the families of the sick, often with devastating consequences on psycho-physical.
When a family discovers that it is a member of Alzheimer patient faces a critical moment that can sometimes last for years, and that requires an internal restructuring difficult and complex. They must also assist the helpless tragedy.
The offer that is not there.
Censis from the 1999 show in terms of forms of economic support, only 34.1% of family members of patients with Alzheimer receive the accompanying benefits, an income to a maximum of 67.7% between the most serious patients. The new generation of drugs that could alleviate the cognitive and functional, are almost always a total load of the family;
In terms of access and use of services, the data describing a part of the disappointing and worrying.
Very few patients are attending day-care centers (7.6%) and for the majority of those who use it is a private service fee with a monthly fee rather high.
Family members who have received a care services are integrated just 6.1%, given that only increases with the worsening of the disease.
The shelter in health care facilities (hospitals) on the National Health System, is a phenomenon linked mainly the aggravation of the situation or in carrying out diagnostic procedures related to the start of the appearance of symptoms. Censis The survey tells us that in 1999 he turned to hospitals 19.8% of people with Alzheimer's not serious and 30.8% of patients with a worsening of the situation.
The shelter in social welfare facilities (homes) is a phenomenon quantitatively insignificant. At the base of the shelter are mostly needs temporary relief from duties of family care (63.6% of cases) or behavioral disorders of the sick who require large family management problems (22.7%)
As for the services of non-health care for more than 30% of respondents using employees and family members pay only 13.85% received care at the intervention of social assistance.
Attention on the relationship between family and services, should be given to the issue. The survey shows that 78% of respondents felt caregiver at all or almost all of the insufficient information available about the disease and the situation is even worse with regard to possible actions of which it is informed only 6.6% of sample.
Compared to the sources revealed that the medical practitioner is the most cited source of information (48%) which followed the associations of family members and patients, and the media.
Doctors in general have been a source of information for only 7.2% of respondents.
Faced with this situation, the relationship between the family and the institutional network of services appears to be deceptive if not disarming when you consider that the most useful services that tend to lack the most (by reference to the Censis and data already mentioned in Chapter three).
The inadequate response of the weight that exacerbates the disease requires the patient and his family and, in fact, end up denying that those taking early action, even at the moment, would improve the conditions of the patient, delaying the time ' aggravation of the situation and the welfare of improving the quality of life of patients and their family, to save money and social issues.
When a family discovers that it is a member of Alzheimer patient faces a critical moment that can sometimes last for years, and that requires an internal restructuring difficult and complex. They must also assist the helpless tragedy.
The offer that is not there.
Censis from the 1999 show in terms of forms of economic support, only 34.1% of family members of patients with Alzheimer receive the accompanying benefits, an income to a maximum of 67.7% between the most serious patients. The new generation of drugs that could alleviate the cognitive and functional, are almost always a total load of the family;
In terms of access and use of services, the data describing a part of the disappointing and worrying.
Very few patients are attending day-care centers (7.6%) and for the majority of those who use it is a private service fee with a monthly fee rather high.
Family members who have received a care services are integrated just 6.1%, given that only increases with the worsening of the disease.
The shelter in health care facilities (hospitals) on the National Health System, is a phenomenon linked mainly the aggravation of the situation or in carrying out diagnostic procedures related to the start of the appearance of symptoms. Censis The survey tells us that in 1999 he turned to hospitals 19.8% of people with Alzheimer's not serious and 30.8% of patients with a worsening of the situation.
The shelter in social welfare facilities (homes) is a phenomenon quantitatively insignificant. At the base of the shelter are mostly needs temporary relief from duties of family care (63.6% of cases) or behavioral disorders of the sick who require large family management problems (22.7%)
As for the services of non-health care for more than 30% of respondents using employees and family members pay only 13.85% received care at the intervention of social assistance.
Attention on the relationship between family and services, should be given to the issue. The survey shows that 78% of respondents felt caregiver at all or almost all of the insufficient information available about the disease and the situation is even worse with regard to possible actions of which it is informed only 6.6% of sample.
Compared to the sources revealed that the medical practitioner is the most cited source of information (48%) which followed the associations of family members and patients, and the media.
Doctors in general have been a source of information for only 7.2% of respondents.
Faced with this situation, the relationship between the family and the institutional network of services appears to be deceptive if not disarming when you consider that the most useful services that tend to lack the most (by reference to the Censis and data already mentioned in Chapter three).
The inadequate response of the weight that exacerbates the disease requires the patient and his family and, in fact, end up denying that those taking early action, even at the moment, would improve the conditions of the patient, delaying the time ' aggravation of the situation and the welfare of improving the quality of life of patients and their family, to save money and social issues.
Understand and be understood
The communication is the essence of all human experience: become unable to understand others and become unable to make themselves understood are the most disastrous of Alzheimer's disease.
• Failure to understand more ... the patient begins to have difficulty following the rapid and complex conversations, especially if the environment is noisy. Often leaves the subject and when there are clear guidelines in the dialogue is often hard to follow. But includes orders written and very well may decode the gestures and facial expressions.
• Failure to understand more ... initially the patient has trouble thinking about what that means. It's slow to speak, is repeated often forget certain words or wrong.
Gradually, the words will erase from memory: no longer the name of the objects ... but we can describe its use!
He speaks in a more slow and repetitive, talking less frequently, until you get to say nothing more.
What to do?
1. try to keep contact with him / her to avoid the increasingly isolated.
2. do not ever say in advance "so do not understand !"... sometimes can take the main idea or recognize the significance of a particular word, you could hurt / ae not ever spoken as if it were not this!
3rd communication with a patient suffering from Alzheimer's disease involves both verbal language and non-verbal. Even if does not understand the meaning of words, remains sensitive to the emotional atmosphere that develops in interaction. If you feel confident that he communicates more easily.
4. parlategli not as a child! Not facilitate the understanding ...
5. several ways you can help the person understand what you want to communicate
* Eliminate unnecessary noise such as radio or television
* Move slowly and get in front of her. If you are sitting, sit to be at its height. Establish an eye contact, touch him gently and pronounced his name, smiling
* If the person does not want to talk not sforzatela ... do it again a few minutes later
* Speak slowly, so calm and sweet maintaining eye contact as long as possible (if you use the high tone of voice that you can think in anger)
* Do not suddenly change topic of conversation. In this way avoid confusion. If you want to change the subject diteglielo before: "Now you want to talk about something else ..."
* Let a speech at a time: her memory prevents him from listening to different information at the same time
* Use of short sentences and simple words, avoiding lengthy explanations "you harbor the hairdresser to let you dye your hair, cut and make the turn because you are no longer going to be two months and six more when you're pretty well-combed." Ditele rather: "Do you harbor the hairdresser!"
* When it is possible to do so, use of objects to communicate, for example if you want to take it walking chiedeteglielo showing capotto
* Always specific questions: "want to turn that light?"
* Use limited response to questions not listed, for example, a long list of beverages to drink
* Avoid figurative language: Do not say such as "jump in the bath!"
* Reword the message if they have not understood by respecting their time to understand. Avoid any kind of pressure ...
* Do not interrupt when he speaks
* Try to capture the emotion that lies beneath the words being careful with his facial expressions
• Failure to understand more ... the patient begins to have difficulty following the rapid and complex conversations, especially if the environment is noisy. Often leaves the subject and when there are clear guidelines in the dialogue is often hard to follow. But includes orders written and very well may decode the gestures and facial expressions.
• Failure to understand more ... initially the patient has trouble thinking about what that means. It's slow to speak, is repeated often forget certain words or wrong.
Gradually, the words will erase from memory: no longer the name of the objects ... but we can describe its use!
He speaks in a more slow and repetitive, talking less frequently, until you get to say nothing more.
What to do?
1. try to keep contact with him / her to avoid the increasingly isolated.
2. do not ever say in advance "so do not understand !"... sometimes can take the main idea or recognize the significance of a particular word, you could hurt / ae not ever spoken as if it were not this!
3rd communication with a patient suffering from Alzheimer's disease involves both verbal language and non-verbal. Even if does not understand the meaning of words, remains sensitive to the emotional atmosphere that develops in interaction. If you feel confident that he communicates more easily.
4. parlategli not as a child! Not facilitate the understanding ...
5. several ways you can help the person understand what you want to communicate
* Eliminate unnecessary noise such as radio or television
* Move slowly and get in front of her. If you are sitting, sit to be at its height. Establish an eye contact, touch him gently and pronounced his name, smiling
* If the person does not want to talk not sforzatela ... do it again a few minutes later
* Speak slowly, so calm and sweet maintaining eye contact as long as possible (if you use the high tone of voice that you can think in anger)
* Do not suddenly change topic of conversation. In this way avoid confusion. If you want to change the subject diteglielo before: "Now you want to talk about something else ..."
* Let a speech at a time: her memory prevents him from listening to different information at the same time
* Use of short sentences and simple words, avoiding lengthy explanations "you harbor the hairdresser to let you dye your hair, cut and make the turn because you are no longer going to be two months and six more when you're pretty well-combed." Ditele rather: "Do you harbor the hairdresser!"
* When it is possible to do so, use of objects to communicate, for example if you want to take it walking chiedeteglielo showing capotto
* Always specific questions: "want to turn that light?"
* Use limited response to questions not listed, for example, a long list of beverages to drink
* Avoid figurative language: Do not say such as "jump in the bath!"
* Reword the message if they have not understood by respecting their time to understand. Avoid any kind of pressure ...
* Do not interrupt when he speaks
* Try to capture the emotion that lies beneath the words being careful with his facial expressions
Confidences
do not remember my name ... That is a crucial point in our dealings with people suffering from dementia. Often for a long time does not remember the name or who we are, but many studies have found that even in this condition, many patients appear to recognize that long after the person has emotional ties with them. The communication is changed ... do not know the names but their behaviors differ depending on whether the person has a connection with them ... the recognition of a person is not limited only to then say that his name!
I happen to lose your patience ... it is quite normal to lose patience at times. What is serious is not admit it. We must learn to forgive yourself! When the moments of impatience become too frequent, is a sign that you are tired and it is time to ask for help ...
the person I love is so changed since the disease does not recognize that more and live a series of contradictory feelings ... During its development, Alzheimer's disease transforms some elements of personality, often in appalling! Each step brings the family to have to deal with a new person. The contradictory feelings that are entirely legitimate, often stem from the fact that the behavior of sick family are difficult to understand and accept. Love and misunderstanding go hand in hand ...
The disease, because of cognitive loss causes strange behavior of the inevitable need to understand that these are no longer dictated by the usual logic, but by intellectual processes damaged in a person who seeks, for better or for worse, to adapt to the environment.
say false things about me, and this makes me feel sick ... when you deal with this issue we have to distinguish between someone who minds and someone whose cognitive abilities are impaired. The patient has Alzheimer without "evil" has no masks, and is vulnerable, but its capacity or the memory of an event can be confusing and lead to misunderstandings or worse ... when these incidents occur, it is important to be able to talk to someone with whom you have confidence, try not to dramatize ...
I happen to lose your patience ... it is quite normal to lose patience at times. What is serious is not admit it. We must learn to forgive yourself! When the moments of impatience become too frequent, is a sign that you are tired and it is time to ask for help ...
the person I love is so changed since the disease does not recognize that more and live a series of contradictory feelings ... During its development, Alzheimer's disease transforms some elements of personality, often in appalling! Each step brings the family to have to deal with a new person. The contradictory feelings that are entirely legitimate, often stem from the fact that the behavior of sick family are difficult to understand and accept. Love and misunderstanding go hand in hand ...
The disease, because of cognitive loss causes strange behavior of the inevitable need to understand that these are no longer dictated by the usual logic, but by intellectual processes damaged in a person who seeks, for better or for worse, to adapt to the environment.
say false things about me, and this makes me feel sick ... when you deal with this issue we have to distinguish between someone who minds and someone whose cognitive abilities are impaired. The patient has Alzheimer without "evil" has no masks, and is vulnerable, but its capacity or the memory of an event can be confusing and lead to misunderstandings or worse ... when these incidents occur, it is important to be able to talk to someone with whom you have confidence, try not to dramatize ...
The Stress of caregiver
- 10% of people suffering from dementia of Alzheimer type is hospitalized in institution
- 15% live alone
- 25% with the family of origin
- 50% only depends on the spouse
Often the burden of care within the family, is managed by a single person as the other members gradually leave the burden of care and delegating more and more to a single member of the family.
The family that takes care of, so is likely to be isolated and emotionally and socially isolate themselves from public life and private, to move towards a real crisis psychic.
Assist a patient suffering from Alzheimer includes aid for the majority of gestures and acts of daily life, the surveillance is necessary, both day and night and the family remains in constant alarm. The effort fisco who assists an elderly demented is not so serious because of its intensity, and for the duration that is relentlessly.
Helping the caregiver involves him understand the importance to seek and accept help from family, if available, or other external stakeholders. A group of self-help, undertaken by those who suffer from Alzheimer's, can be supportive and may represent a moment of shared problems and solutions.
It 'hard to find regular care of an individual suffering from Alzheimer's disease?
Several studies have shown that it is much more stressful to take care of a person who has lost his intellectual faculties and behavioral problems rather than deal with only one person suffering from physical problems.
1. the type of assistance required is a serious responsibility for the individual patient loses little by little his ability to judge, to express themselves, to appreciate and become increasingly dependent.
2. given the fact that the patient no longer able to express its demands are not expressed in words, this involves having to learn to understand through other means (non-verbal communication).
3. the change of personality and behavior sometimes unexpected abnormal and often are often difficult to endure so much to give sorrows even though it was aware that the patient does so without malice.
4. leads to the disease have difficulty with the pleasant moments and this may lead to a sense of loneliness and fatigue. Often one has the impression of giving without receiving anything much!
5. Finally, all these elements is added, the immense pain of seeing a loved one gradually lose and irreversibly, its autonomy and its cognitive faculties.
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