Worldwide, millions of people suffer from Alzheimer's disease and this figure continues to grow in direct proportion to the increase in average lifespans. Caring for a patient as the disease progresses is extremely tiring and typically this burden falls on one or more family members. If you are caring for a loved one who has been diagnosed with this disease, know that you have to face disagreements, communication problems, jealousy, anger and numerous other difficulties that will show themselves along the way. To be able to carry out this task in the best possible way and make sure that the patient's needs are constantly met, you must organize and work within a team; he also remembers that even the whole family can be overwhelmed by this very debilitating pathology.
Steps
Part 1 of 3: Collaborate
Step 1. Organize a family reunion
If you live in a family unit that is used to communicating regularly in a straightforward and honest way, you must put these characteristics at the service of the patient; if you don't have this luck, you have to go to great lengths to establish such relationships. You must have a frank, constant, and honest conversation about the sick person's care, wishes, and plans.
- Ideally, you should organize this meeting when the patient is still fully able to attend, so that he or she has a chance to express their preferences regarding care, concerns, fears and ask questions.
- This is a very important topic that needs to be addressed in a specially organized family reunion; don't try to deal with it before dessert over Christmas lunch.
- Consider calmly with other members what care is needed for the present moment and for the future, so that you can lay a solid foundation for avoiding confusion later on.
- Let each relative think about their commitments, how to adapt them to the new situation and how to organize themselves for the holidays and holidays together with the person who mainly cares for the sick person.
- Everyone should consider their own strengths and abilities to make available.
- Remember to show gratitude, convey positivity and reassure the individual that most of all remains in contact with the patient; this person needs a lot of support.
- Don't overlook the financial, personal, and emotional limitations of the family.
- Consider hiring a professional; this is usually a nurse or social worker who specializes in aged care.
Step 2. Divide the responsibilities in a practical way
It is almost inevitable that one person (often the spouse or child) becomes the main person in charge of caring for the sick, despite the great commitment and involvement of other family members. So try to distribute the tasks equally, but accept the fact that practical aspects, such as time available, closeness and individual skills, play an important role in this process.
- For example, a sister who lives 150 km away cannot objectively provide daily care, while a brother who is already struggling to manage his checkbook cannot take care of the financial, legal and medical records.
- Create a "care notebook" that you can distribute and update regularly. A normal ring binder is also fine, but perhaps a "virtual" notebook that every family member can access from the computer is much more practical. Regardless of the format, you should include important information about your care (medications, doctor's visits, and so on), as well as the agreed breakdown of each relative's responsibilities.
- If at any time you feel overwhelmed, seek help from a friend or professional, such as a social worker or a nurse who specializes in geriatric care. you, your family and health professionals need to work together as a team to find solutions and take better care of the patient.
Step 3. Address important legal, financial, and clinical issues
In some respects, caring for a relative with Alzheimer's is very similar to providing terminal care, with the only difference being that it lasts for a long time; in both cases, managing many important documents (and making crucial decisions) is an integral part of the process. Remember to discuss these details with the whole family, including the patient if his condition allows him to play an active role.
- In addition to practical matters, such as making sure bills are paid and various insurance policies are renewed, you need to verify that the person has a valid will and has also expressed their wishes regarding care (living will).
- While it can sometimes be a cause for disagreement and friction, it is generally better for one family member to have the power of attorney to make important legal and / or financial decisions, while another (or the same) has full rights to handle health matters.; the whole family must participate, but sometimes it is necessary that there is "only one head that decides".
- Find information online or contact local professionals to find out how to bring all important legal issues together and obtain a power of attorney for health care and financial matters. You can contact an attorney or an Alzheimer's association that provides its own team of lawyers.
Step 4. Stay united in the face of changes and difficulties
Even if there is good harmony in the family, expect some discussion and disagreement regarding care. This new situation alters the dynamics of the family, bringing to light old grudges or new disagreements; in difficult times it is important to stay focused on the main goal - to provide the loving care the family member deserves after they have spent their life taking care of you.
- Express your feelings and opinions frankly and honestly in regular meetings, respecting the views of other family members; if there are irreconcilable differences, seek help from an outside counselor, such as a psychologist, clergy member, or even the patient's doctor.
- For example, deciding whether the patient should leave their home to move to a nursing home often causes friction between relatives, the opinions of each can be very different and difficult to mediate; the support of a person who is external but experienced in Alzheimer's disease can therefore help to find a compromise.
- You can also find a support group for people who care for the elderly sick person. This is a good way to understand that you are not alone in dealing with the disease and that there are many other families in the same situation. You can find groups "in the flesh" or online; consult the Alzheimer Italy Federation website for some suggestions.
Step 5. Spend time with the whole family
The constant care that a late-stage Alzheimer's patient requires can make you and other relatives feel more like "colleagues" working in different shifts rather than siblings, cousins and so on. Take advantage of every opportunity to share time in pleasant circumstances, such as a family reunion for holidays or birthdays; abandon the frustrations and disagreements of the role of "nurse" for a few hours.
- Whenever possible, involve the sick person in these pleasant gatherings; make sure he is treated like a living, present member of the family. Make practical changes when organizing such events at home (for example, limit the number of attendees or schedule the meeting early in the day, when Alzheimer's patients are generally better off) or in public places (choose a restaurant that the patient knows well and that is accessible to him).
- It is important to remember that the cause of the difficulties facing the family is the illness and not the sick person; keep the perspective right and find the humorous side of things whenever possible.
Part 2 of 3: Providing Care
Step 1. Create a safe environment for the sufferer
The mental and physical decline associated with Alzheimer's disease proceeds erratically, but is inevitable, and the risk of injury from accidents or confusion continually increases. As a family, you must identify and address issues affecting the safety of your loved one's home or any place they live in now.
- Make changes to remove obstacles that can trip her up, lock up sharp or dangerous objects, hang signs with very large lettering and bright colors (for example "BATHROOM" on the toilet door) to make the house more safe and fit for a person with Alzheimer's disease.
- Comfort her by informing her that she is safe and that you are there to help her; these little things should be very thoughtful and helpful, especially when she is confused or upset.
- Buy comfortable shoes with a sole that provides good grip. Free the passages and access roads of the house from objects that could trip or fall the family member you assist; some potential dangers are carpets and doormats.
Step 2. Stick to the routines
Confusion is one of the typical symptoms of Alzheimer's disease that triggers fear, anger and hostility on the part of the patient. By setting up and following a well-defined "daily ritual", you make everything happen in a more familiar way, limiting a little the sense of loss and anxiety.
- Simplify things. You should define a daily routine for yourself and your family; if it helps, set a schedule for the whole day, clearly stating the responsibilities of each person.
- You can vary the activities - for example you can do a puzzle before lunch one day and look at the photo album the next - but try to keep a constant schedule (wake up, get dressed, have breakfast, take medications, do some exercise, listen to music together and so on). Identify each daily task for the loved one.
- In particular, make sure that the moments of meals, bathing and dressing are always the same; a patient with Alzheimer's has a lot of trouble changing these habits.
- Watch out for evening crises. This is a fairly frequent phenomenon, which leads the patient to become restless and agitated at sunset; be prepared and try to keep a calm and peaceful atmosphere during the evening. Dim the lights, reduce the noise level and play some relaxing music; look for songs from the time when the patient was young, to reduce mental agitation and confusion.
- Minimize daytime naps.
- Plan moments for exercise, such as a light walk, so that the sufferer can enjoy a restful night's sleep.
- Make sure that all the people who take care of the family member respect the same routine to ensure a certain consistency; communicate with each other regularly on this matter.
Step 3. Encourage good interaction
The disease progresses differently from person to person, but in the end the patient usually loses much of the communication skills, especially the verbal ones. Keep talking to your loved one and don't limit yourself to monologues, even when it starts to be difficult to understand what they are trying to say; learn to pick up non-verbal cues, such as facial expressions and hand gestures.
- Ask other relatives and visiting people to speak normally with the patient, even if it is impossible to maintain a coherent conversation; remind them that they should not act as if the patient is not present.
- Be aware of the tone of voice; do your best to show calm and respect even when you feel frustrated.
- Be patient during his anger attacks, remember that they are triggered by the disease.
- If you feel dejected, take a break; leave the room and sit outside for a few minutes, do some deep breathing exercises to calm yourself down.
- Ask closed questions with either a "yes" or a "no" answer.
- Give the person more time to listen to you.
- Talk to him in a well-lit room.
- Stand in front of him when you talk to him.
Step 4. Show respect for your family member and expect others to do so too
In addition to speaking as if the patient were not present in the room, some people (usually without any bad intentions) lose sight of the fact that they must be treated with dignity and respect; for example, they could change his dirty clothes in front of other individuals. Remind yourself and people that no matter how much the disease progresses, the affected family member is always a very important person to you.
Work together as a family of "nurses" to ensure that basic hygiene and appearance care tasks are done, especially if the patient has always been very proud of their appearance. For example, when it comes to clothing, you should prefer the comfort and simplicity of clothes that are easy to put on and take off, but avoid having the sufferer wear the same dirty clothes over and over for days
Step 5. Accept that erratic but steady decline is inevitable
Alzheimer's disease is not curable, it cannot be stopped or delayed significantly and the patient's health conditions are destined to get worse and worse; the transition from the initial to the intermediate phase can be very rapid or develop over many years. Practice preventative measures recommended or approved by the patient's health care team to try to postpone the worsening of symptoms, but accept that your first goal is to create the most comfortable and loving environment possible for the family member.
Whether or not it is effective in delaying the worsening of health conditions, keeping an Alzheimer's patient physically, socially and mentally active has benefits for the patient himself and for the person who cares for him. You can consult this link to find some practical advice
Step 6. Be aware of their needs
At times, the family member may have fits of aggression or nervousness which in some cases are related to the disease, but could also have very different causes. Pay attention to the factors described below that may irritate him:
- Ache;
- Constipation;
- Too much caffeine
- Lack of sleep
- Dirty diaper.
Part 3 of 3: Getting More Help
Step 1. Don't feel guilty about living your life
No matter how many family members are involved, caring for an Alzheimer's patient is physically, mentally and emotionally exhausting. About 40% of people who care for a relative with this disease sooner or later manifest depressive symptoms; everyone needs a break from time to time and everyone needs help.
- Keep in regular contact with other family members who work with you, let them know when you have reached your limit, and ask if someone can "take over" for a short time.
- Also, do not think that you have to dedicate every free minute you have from work, family and other responsibilities to your duties as a "caregiver"; give yourself time for yourself and your life, otherwise you can't take care of the sick in the best way.
- Learn to manage stress; take five deep breaths, practice yoga or start meditating.
- Take care of yourself, make sure that you are always at the peak of your physical condition by undergoing medical tests, exercising, eating and sleeping well.
- Recognize signs of stress, such as rejection, anger, social isolation, anxiety about the future, depression, exhaustion, insomnia, irritability, lack of concentration, and health problems. Exhaustion can damage your health and that of someone with Alzheimer's, so you need to be prepared to spot the signs. If you feel close to mental and physical breakdown, let other family members know about your feelings so they can support you and give you a break for a day.
Step 2. Evaluate GPS devices
Wandering is one of the biggest problems for Alzheimer's patients. If your family member also tends to leave the house alone and get lost, you can find out more about these technological tools that allow you to locate them; generally, it is a watch or an object to be worn on the belt or around the neck equipped with a GPS detector and which alerts an operations center when the patient crosses the boundaries defined by relatives. If the first attempts to locate the person fail, the police are also involved. You can do some research online or contact the Alzheimer's family members' association to find out more.
On this web page you can find numerous practical tips to manage wandering
Step 3. Don't wait for another family member in need to ask you for help
When you need to take a break and be replaced in your "caregiver" duties, ask for it; when you notice that another relative is in the same situation, offer your help. Teamwork means anticipating needs and offering your contribution to achieve a greater goal.
As members of the same family and as carers for the same patient, put aside your differences whenever possible and maintain a relationship of compassion and understanding. Do what you can to help others, which is definitely what the relative with Alzheimer's would want
Step 4. Seek the help of professionals
No matter how good your intentions are, how much energy or determination you have to handle the situation within the family, at some point caring for an Alzheimer's patient becomes too big an issue. You absolutely must not be ashamed of this, but stay focused on what is best for the patient, even when it means entrusting part of the care to qualified professionals. Listed below are some of the possible external help, but there are others:
- Temporary nurses or shelters that provide comprehensive care 24 hours a day to offer family members a short, predefined "breathing" period in which to regain energy;
- Meal services, which bring home ready-made food according to a pre-established schedule;
- Day centers for the elderly that provide special activities for Alzheimer's patients under the supervision of professionals and in compliance with a schedule;
- Home nurses offering various services, from occasional visits to 24/7 care;
- Doctors specializing in geriatrics and palliative care who regularly visit the patient offering suggestions for assistance and coordinating the necessary services.
Step 5. Take the patient to the doctor regularly
Make sure he is seen every 2-4 weeks, especially in the early stages of treatment; thereafter, you can limit yourself to checks every 3-6 months. During these appointments the doctor can make changes to the drug therapy and answer any questions; moreover, it assesses the patient's health conditions under various aspects, from daily activities to cognitive abilities, from possible comorbidities to mood disorders, up to the state of the person who takes care of them.
The doctor evaluates the family, provides help in coping with your tasks and indicates resources you can turn to; does his best to support you and teach you how to manage stress
Step 6. Find a support group for people who care for an Alzheimer's patient
You can find comfort, support and assistance within the team of "nurses", but sometimes it is easier to get help from strangers who are experiencing the same situation; With the increase in cases of this disease, the number of such support groups has also grown.
- Don't wait for a family member to ask you for help; try to intervene whenever possible. Sometimes, even simple things, like doing part of the housework or taking the sick person for a walk, can take a burden off the shoulders of other caregivers; you have to give other people some time to recharge your batteries as well.
- Talk to other family members who help you treat the sick person to find support groups. There are also online associations that you can join or join; start your search from sites dedicated to this disease, such as https://www.alzheimer.it/ or
Advice
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To learn even more about Alzheimer's disease and the techniques for caring for a family member, refer to these sources:
- Dementia decay: neurological and neuropsychological framework; Spinnler H. - The Scientific Thought, Rome 1985.
- Alzheimer's: a disease to be experienced; Gruetzner H., Spinnler H. (edited by) - Tecniche Nuove, Milan 1991.
- List of readings recommended by the Alzheimer Federation of Italy.
