October 6 was the national day for caregivers, who support people with Alzheimer’s disease every day. Nearly 1.2 million people are currently affected by this pathology, which has repercussions throughout the family sphere. How can we support sick people in their daily lives? What structures can support caregivers and answer their questions? Anne Baccouche, clinical psychologist, support and development project manager for the France Alzheimer association, answers us.
1. What are the most common disorders in a person with Alzheimer’s disease?
Alzheimer’s disease is the most widespread neuroprogressive disease in France. It is characterized by memory problems and a progressive impairment of certain cognitive functions. It can result in signs such as difficulty speaking (aphasia), carrying out everyday gestures (apraxia), recognizing loved ones or adapting one’s behavior to the context in which one finds oneself.
Anne Baccouche indicates that the sick person can also present restlessness, aggression or frequent wandering. She explains that this “mBehavioral manifestation must be linked to the experience of the sick person and their feelings. Indeed, a significant part of his behavior stems from his emotional state.” So, “behind the aggression and agitation, there is often frustration, anxiety, or a feeling of not being understood”.
We must therefore try to distinguish between behaviors directly linked to neurological damage, such as disinhibition, and the discomfort that sick people may feel.
The specialist thus recalls the need to communicate andtry to understand what the sick person is going throughbecause he “There is not necessarily any notion of intentionality behind the behavior. For example, a person who seems to want to run away may simply need to move, because walking calms them down..”
2. Which health professionals are involved in the management of this disease?
Several professionals support the sick person in their care journey. Anne Baccouche explains that “the general practitioner is often the first to be consulted, when troubles come to interfere with daily life. He carries out an initial clinical examination, and can then refer the person to other specialists, such as a neuropsychologist, a neurologist or one geriatricianfor additional examinations.”
When the diagnosis of Alzheimer’s disease is made, a care pathway is put in place. Professionals such as occupational therapists, speech therapists or nurses can intervene and answer the questions and needs of sick people and their caregivers.
3. How can you help a person suffering from this disease on a daily basis?
Anne Baccouche explains that it is necessary toalways be attentive to emotions of the sick person, so as not to isolate them: “it is important to always pay attention to what the person is feeling, because it is their reality. This can explain a lot of things in terms of his reactions and behaviors. It is therefore necessary to show interest in her and recognize what she may be going through.” Besides, “the person always remains sensitive to the emotional climate and the fact that we are reassuring, even if they no longer understand the meaning of certain words or what is happening”.
The specialist adds that care evolves with the illness, which is why the support of the caregiver constitutes “support in the moment. It must adapt to what the person testifies, especially since communication is not based only on language. It also goes through his emotional state, his expressions or his gestures. This is why it is important to always combine words with gestures, to describe what we are going to do and why we are doing it, to guarantee a reassuring and containing climate”.
Anne Baccouche reminds that it is important to prevent the risk of isolation of the sick person and their caregiver: “the sick person can no longer express themselves as before and, as a result, she may withdraw into herself because she is experiencing something painful that she has difficulty sharing with those around him. The caregiver can also isolate himself, because he does not want to leave the person, or because he is afraid of the gaze of others in society. We must therefore allow the person suffering from Alzheimer’s disease to remain in contact by adapting to them, because they will no longer necessarily have the capacity to adapt..”
4. Which structures should you turn to for advice on how to support a sick person?
Several systems exist to support a sick person and their caregiver on a daily basis, and answer their questions. Anne Baccouche explains that it is possible to call on:
– a home-help, which favors keeping the sick person at home. Their interventions may concern household chores, meal preparation, but also getting the sick person up, washing or going to bed;
– a specialized Alzheimer’s team, made up of gerontology care assistants, psychomotor therapists and even occupational therapists. Their intervention helps to maintain the autonomy of the sick person, to reduce possible behavioral problems and to support the sick person/caregiver relationship. You must request a medical prescription to benefit from the intervention;
– a day reception, which offers therapeutic activities to sick people, and which offers advice to caregivers.
Specialized associations are also present to support patients and their families in their daily lives. This is particularly the case of the France Alzheimer association, the only national association of families recognized as being of public utility in the field of Alzheimer’s disease and related diseases, which works to recognize the needs and defend the rights of sick people and their families.
Anne Baccouche explains that her role is “to provide help and support to sick people and caregivers through a wide range of support actions”.
It also offers training to help caregivers understand their role and prevent any risk of exhaustion.
5. What material and financial assistance can a person with Alzheimer’s disease and their caregiver benefit from?
Patients may be eligible for assistance, including:
– recognition oflong-term condition. It allows 100% coverage of examinations and care. To benefit from it, you must contact the attending physician who requests it from Social Security;
– the mobility inclusion card. It recognizes the patient’s state of disability, and facilitates their access to transport and places open to the public, transport. It must be requested from the MDPH (departmental center for disabled people);
– the personalized autonomy allowance (APA), which covers all or part of the costs which contribute to keeping the sick person at home or their reception in a medico-social establishment. You must request it from the town hall or department.
People aged under 60 can benefit from specific assistance, such as the allowance for disabled adults. It must be requested from the MDPH, and it is paid by the family allowance fund.
Finally, there are measures intended for working caregivers who need to reduce their activity, including:
– of the caregiver leave lasting 3 months. However, he is not compensated;
– A family solidarity leave of 3 months renewable once. It can be supported by a daily allowance. It is necessary to contact the primary health insurance fund to find out the conditions for granting it.
In all cases, it is recommended to inform your employer of this situation, to see if it is possible to put in place specific arrangements.
6. What support platforms can prevent caregiver burnout?
Caregivers adapt their pace of life to support their sick loved one. Structures are there to support them in their daily lives and avoid any risk of isolation and exhaustion.
Caregivers can, first of all, ask for support from their family and friends.
Support and respite platforms can also take over by providing temporary accommodation for the sick person. They also offer helping/helped workshops. which help prevent caregiver burnout.
The France Alzheimer association also offers discussion groups, relaxation workshops and training to support caregivers in their daily role. The association also held 3 webinars on this subjecton the occasion of Carers’ Day on October 6.
Thanks to Anne Baccouche, clinical psychologist, support and development project manager at France Alzheimer, for answering our questions.
Additional sources:
Read also :
⋙ How to prevent Alzheimer’s disease through diet?
⋙ Alzheimer’s disease: at what age can it start and what are the risk factors?
⋙ Alzheimer’s disease: this type of injury would increase the risks