Alzheimer – guiding information for main caregivers

Over the years I have encountered numerous clients which were in a situation of taking care of one of their parents and thus, I have written ”Alzheimer – guiding information for main caregivers” in the form of a brochure, particularly in support of these clients and with the hope that some level of psycho-education would better prepare them mentally to deal with what such a journey requires.

WHAT IS ALZHEIMER’S DISEASE?
 Alzheimer’s disease is a form of accelerated aging;
 The onset of the disease is usually slow, progressive and can last from several months to 2-4 years;
 The course of the disease involves a gradual decline in cognitive abilities over 7 to 10 years
 All brain functions, language, thinking, memory, motor skills, behavior, personality are gradually affected

WHAT DOES ALZHEIMER’S DISEASE LOOK LIKE?
Cognitively
• Memory disorders (impossibility to recall previously learned information and to accumulate new information)
• Speech disorders (can’t find the words, even for simple concepts)
o the inability to carry out coordinated motor activities (he no longer knows how to dress, lock the door, how to use the remote control)
• Confusion between the imaginary plane and reality
o the impossibility to recognize, identify and name common objects;
o disorganization of daily activities, inability to make decisions;
o problems related to abstract thinking, calculation disorders, temporal-spatial disorientation, loss of initiative;
• In the beginning, the difficulty of recognizing familiar faces, followed by erroneous identifications (it is possible to confuse her husband or children with relatives from the distant past);

Non-cognitively
 Agitation and physical or verbal aggression
 Psychotic disorders, hallucinations, delusional ideas (jealousy, persecution, abandonment);
 Mood disorders: depression, anxiety, less often states of euphoria;
 Exaggerated reduction or increase in appetite, careless eating, ingestion of non-food substances
 Sexual disinhibition: inappropriate comments on sexual topics, obscene gestures, rarely sexual aggression;
 Fecal incontinence, satisfying physiological needs in inappropriate places or in the presence of other people;
 Vagabondage

BEHAVIORAL MANIFESTATIONS
 The patient becomes progressively more indifferent and unable to recognize his behavior or dysfunction on others;
 When indifference is communicated to him, he is surprised or feels hurt, or, worse, promises to correct himself;
 In an attempt to protect his self-esteem and confidence in himself, he constantly attacks, accusing others of taking his things, when in fact he himself put them elsewhere;
 Even sedentary activities tire him a lot, sleep periods during the day causing insomnia during the night;
 He seems to be afraid of the fact that he could be abandoned, even for a short time, that is why he clings to the caregiver or frequently checks if he has left home;
 Sometimes he can jump out of bed and behave as if in a dream (gets dressed and gets ready to go to work or wants to go home, not recognizing the house where he lives;
 At night he is more disoriented and therefore more aggressive;

IMPACT ON THE FAMILY
 The limited use of social support services puts the burden of caring for the sick on the shoulders of the family, which displaces great efforts to meet the needs;
 Patient care can have consequences on the family unit;
 Consequences on the caregiver’s physical and mental health, on his participation in social and recreational activities;
 Consequences on his financial security;
 The evolution of the disease requires different interventions from the family:
 In the first phases, caregivers focus on household tasks, for which the patient becomes progressively unable to perform them;
 Later, the caregivers end up helping the patient with more personal services (toilet, bathing, dressing)
 As the disease progresses, caregivers may need to provide ongoing surveillance;
 The patient’s reactions, specific to the disease, often lead to attitudes of reproach on the part of the caregivers who, later, feel guilty because of this reaction;
 Caregivers can lose patience by repeating the same things to the patient (and which he immediately forgets);
 Many spouses live with the fear that the sick person will become aggressive;
 Studies report high levels of depression in primary caregivers, due to multiple demands and patient behavior;
 Sons and daughters face their own set of problems and negative feelings caused by the gradual loss of the father’s image in their lives:
 They have to struggle with role reversal (responsibilities and roles once assumed by parents now fall to children)
 They feel saddened by the loss of parental competence, respected so far, sometimes revolt and resent when parents become a burden prematurely;
 The feeling of frustration that, despite the care, the patient does not recover;
 The surveillance continues, as the disease progresses, for fear that the patient will leave, that he may forget the faucets or the stove open;
 The pain caused by the “psychic emptying” of the patient, which is assisted by the helpless, despite the efforts made daily;
 Although they understand that it is only a manifestation of the disease, the patient’s aggressiveness and licentious language make it difficult for the caregivers to overcome these moments;

WHAT TO DO?
 In order to provide effective care to the patient, it is necessary to inform yourself about the disease;
 The support of specialists is very important to gain experience in patient care and to find individual problem-solving strategies;
 It is useful to draw up a spending plan;
 Do not scold the patient because he does not remember;
 Do not raise your voice, because you can be perceived as threatening;
 Do not try to convince the patient that his ideas are not in accordance with reality (Ex. One day in November, the patient says Wow, what a beautiful spring day! It is wise to tell him I understand that you feel well!)

Management of special situations:
 Secure door, window locks, put sensor taps, watch out for gas!
 Use adhesive under mats and non-slip slippers;
 It is necessary not to put mats that slide and to mount support handles in the bathroom;
 So that the unattended patient does not get lost, make sure that he has sewn tags with no. your phone number and address;

Aggression management

 If possible, do not take the patient’s aggression personally. Do not forget that the patient no longer understands the meaning of what was said, but reacts to the tone, anxiety or kindness, relaxation or patience of the caregiver;
 Create a calm environment, remove stressors, including environmental ones (noise, bright lights, TV sound);
 Check the comfort of the person (too thick clothing, the fact that he forgot to eat or slept too much);
 Simplify tasks and routines
 Give him the opportunity to exercise and get some fresh air;
 A relaxing massage or the music he likes can be beneficial;

Management of sleep/circadian rhythm problems
 As much as possible, try not to sleep during the day;
 The program should be light, including walking, listening to music, small attention and memory training sessions, such as looking at a whiteboard of pictures, trying to recover certain memories;

AND LAST BUT NOT LEAST…

• There are specialists who are at your disposal with information, instructions and emotional support;
• As much as possible, involve more people in caring for the patient, to give you moments of respite;
• It is useful to have the phone number of the doctor, the psychologist, as well as a private ambulance at hand, for delicate situations;
• Be aware that you are doing hard work and a great job despite witnessing the loss of your loved one;

https://www.alzinfo.org/brochures/

https://legislature.vermont.gov/Documents/2016/WorkGroups/House%20Human%20Services/Aging%20and%20Dementia/Dementia/W~Martha%20Richardson~Brochure-%20Basics%20of%20Alzheimer%27s%20Disease~2-12-2015.pdf