If your loved one has Alzheimer's disease, you will have to be vigilant at all times and some difficult issues will inevitably have to be managed on a daily basis. Personalised care and support packages allow patients to stay at home, albeit with certain restrictions/conditions.
Why does Alzheimer's disease have such a dramatic impact on the entire family?
When it occurs, this neurodegenerative condition not only progressively destroys recent memories, familiar faces, and a sense of direction but also disrupts the daily life of the entire family. The patients per se are directly affected, but family and caregivers are also impacted to a considerable degree. Partners and children gradually see their loved one decline and cannot understand the sudden change in behavior. Over time, they will certainly have to be more vigilant in order to safeguard a parent who no longer recognizes them and who sometimes tries to run away. Inappropriate accommodation can also pose a real risk. There will also come a time when family members will have to feed, bathe, dress, and care for their elderly relative like their own child. Alzheimer's disease reverses the roles and disrupts the caregiver-recipient relationship on a personal basis.
Loss of autonomy varies considerably from one individual to another, generally spanning a decade. However, the decline is more rapid with early onset disease, i.e. before the age of 65. Although memory loss along with speech, comprehension, and behavioural problems are the order of the day for patients with Alzheimer’s disease and their relatives, there is no need to get alarmed. Vigilance is, of course, uppermost, but your loved one can stay at home thanks to a personalized care and support package:
How can a personalized care and support package be arranged?
Once the diagnosis has been made, a care and support package is implemented with immediate effect. This is a set of measures to support both the patient and their family.
Domestic assistance is available to help the patient with their activities of daily living and to provide respite for any carer. The recently introduced paid leave for caregivers provides additional support for caregivers who have to look after their relatives and work at the same time.
Psychological support is also available to help patients and families accept the diagnosis and manage their future concerns, as and when.
A healthy social life can still be enjoyed thanks to various patient support groups.
Patients can attend memory workshops in day care centers treating this type of condition.
A speech therapist can be called upon to help individuals with significant speech disorders.
Occupational therapists, psychomotor therapists and physiotherapists are also available to provide psychomotor support for disoriented patients.
Legal steps can be taken and a guardian/curator/medical safeguarding officer appointed to protect vulnerable subjects and provide assistance in managing their affairs and/or assets/property.
The fundamental role of the caregiver for patients presenting Alzheimer’s disease
The entire burden rests on the caregiver because, in two out of three cases, this role is adopted by the wife. Sometimes the husband takes the lead, ably supported by their children. Day in, Day out, the caregiver ensures the well-being and safety of their loved one with Alzheimer's disease, particularly as the disease advances.
The caregiver has to constantly monitor their relative to ensure they do not leave the house or run away. They have to help the individual in question get dressed, feed them, and provide assistance with personal hygiene routines. The list is endless and many people devote most of their day to providing this vital support. As the individual becomes more dependent, care will then be required around the clock, 7 days a week.
Specific "Caregiver – Alzheimer’s disease" training courses are also provided, which disseminate information about the disease in an attempt to raise awareness. The society regularly organizes support group meetings. Assistance in the home setting is also provided along with respite care, art therapy for patients, and many other services that are key to improving the daily lives of patients and carers alike.
Which approach should be adopted towards patients with Alzheimer’s disease?
The condition per se is one thing but living with an individual diagnosed with Alzheimer’s disease is another. Feeling helpless when it comes to supporting a partner or parent whose condition is constantly changing on a daily basis, caregivers have their work cut out to support Alzheimer’s patients in their everyday tasks. How can this be achieved?
First and foremost, do not do everything for them, particularly if your loved one is in the early stages of Alzheimer’s disease. You should provide guidance whilst encouraging as much autonomy as possible. Allow them to carry out straightforward tasks that are easy to perform. For instance, if they can still get dressed themselves but do not know which clothes to choose, suggest certain items of clothing but leave the ultimate choice to them.
Avoid upsetting them on a regular basis. This obviously requires patience. Just remember – they are not doing these things deliberately. Reprimanding them will only make things worse and cause greater instability for your loved one. Advise and guide them – easier said than done – but this is in everyone’s best interests.
Focus on the most important thing – the safety of your relative. They must have a safe environment in which to live to avoid falling because they feel disoriented. In fact, you can make it easier for your relative to live independently by removing carpets, unsteady items of furniture, and electrical cables. Do not leave any doors open and accompany them as they move around.
It is also important for them to keep their bearings. Do not change their routine either. These points are very important and will provide reassurance when they get confused.
Avoid stress or new situations that will destabilize them. When you have visitors, family, or friends, explain what is happening to your loved one and take the time to introduce everyone in context. Explain who they are, where they know them from, and when they last met them. Repeat names, but once again, do not worry if your relative does not retain the information. If they are made aware of any issues, they could become more anxious or aggressive, so it is better to try and reassure them instead.
Speak slowly, and ensure that your requests are clear and easy to understand and digest. This will aid the communication process. If something incoherent is said, do not correct them – it’s no big deal...
Help the individual to eat if they are no longer able to feed themselves. This is especially important in the advanced stages of the disease given the high risk of malnutrition. Opt for small quantities. Cut up or blend one of their favorite meals.
It is important to note that, although an individual’s judgment and reasoning may be impaired, their emotions remain intact, even in the advanced stages of the disease. Your partner or parent can still experience joy, anger, fear, love, or sadness, and will respond to each of these sentiments in their own way.
Do not hesitate to get help and set some time aside for yourself to relax and to do things you enjoy. Find someone to hold the fort so that you can take a break, recharge your batteries, step back, and take solace in the company of other caregivers through various associations. If necessary, consult a psychologist to help you deal more calmly and confidently with the situation.
If you get to the end of your tether or if ever you feel like giving up, just ask yourself this question - “What if it were me…” This will help you to be more patient and understanding.
Moreover, continue a warm and personal relationship. Show them affection and tenderness – this is essential, going forward, and extremely beneficial. The diagnosis can be very upsetting and couples can experience difficult periods of estrangement, fear, and diminished desire. You must fight this natural tendency because demonstrations of affection are beneficial for patients and partners alike. In fact, warmth and affection can be a balancing factor. Later on, as the condition advances and couples are no longer able to communicate through speech, a close and loving relationship, tokens of affection, smiles, kind words, and loving caresses remain the strongest form of communication.
How should you react if a patient with Alzheimer's disease runs away?
You must report it to the police by #999 and give a description of your loved one and what they are wearing.
Always have a recent photograph of them so this will help to identify them in an emergency.
Most patients are found between 500 and 2000 meters from where they disappeared if a search is initiated without delay. Do not panic. Start looking in your immediate vicinity.
When you find your relative, you must try to contain your anger. Reassure them and show them warmth and affection.
What are the limitations of home care for a patient with Alzheimer’s disease?
Sometimes the emotional and physical burden is so great that the caregiver is no longer able to cope. When a patient with Alzheimer's disease reaches a critical stage and requires constant care and attention, a move to a care home is the best option in the interests of well-being and safety. This decision should be taken before the caregiver reaches saturation point and becomes exhausted or even depressed. Making the right decision at the right time will allow you to choose the most suitable facility coolly and calmly. You and your loved one should visit the various nursing homes together so that the future resident feels involved in the selection process. Any feelings of guilt on the part of the family caregiver can be addressed with professional help.
Senior Home Plus receives these types of requests on a daily basis. Our elderly care advisors search for high-quality establishments capable of meeting the medical and social requirements of patients with Alzheimer’s disease. They can also be contacted in an emergency. Nursing homes in England have made incredible strides forward in providing optimal care for disoriented patients. They offer secure facilities, specific activities, and professional teams to assist residents with activities of daily living in an ideal setting. The establishments that accommodate patients with Alzheimer’s disease are often located within a nursing home. Every effort is made to welcome the patient and to ensure appropriate patient follow-up throughout their stay.
Such facilities are well-equipped with hospital beds, designated walking areas, ramps, and non-slip floors to prevent frequent and often fatal falls.
Members of staff receive on-going training on how to treat this type of patient. They are dedicated, committed individuals who know exactly how to respond when they are facing aggressive outbursts from residents.
Some nursing homes advocate total immersion of disoriented individuals with the other residents in order to promote their integration. Every step is well organized and geared to meet the specific needs of patients with Alzheimer’s disease within the traditional care home structure.
Do not hesitate to contact one of our elderly care advisors on 0203 608 0055 for free and friendly assistance on making the right choice for your loved one.
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