Alzheimer’s disease affects approximately 5 million people in the United States, according to the Alzheimer’s Association. By 2050 more than 16 million Americans will have this disease. Alzheimers disrupts memory, thinking, personality and everyday functioning. It impairs and eventually kills brain cells. This impairment can lead to symptoms such as forgetfulness, difficulty with time, language problems and inability to recognise loved ones.
According to Alzheimers.gov, About 15 million people care for a loved one with Alzheimer’s in the United States. Knowing what to expect and preparing for the challenges, can help caregivers and their loved ones, who are living with the disease, live better and stay in their homes longer.
Alzheimer’s disease is a chronic continuous loss of neurons that usually starts slowly and gets worse over time. It is the cause of 60% to 70% of cases of dementia. This is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks. In most cases, the first symptom usually occurs in mid-60s.
The most common symptom of this disease is difficulty in remembering recent events, that is short term memory loss. As the disease advances, symptoms can include problems with language, disorientation, mood swings, loss of motivation, inability to self-care, and behavioural issues.
Over time, the brain shrinks dramatically, affecting nearly all its functions. The image below shows a brain without the disease, a brain with advanced Alzheimer’s disease, and how they compare.
Family caregivers provide a whopping 80% of the care at home. More than 40% of family caregivers report that the emotional stress of their role is high or very high. (Alzheimers’s Disease International) As the population ages, more and more families will be faced with how to care for their aging and ailing parents. These caregivers are at risk for higher rates of depression, illness and financial difficulty. Research shows that caregivers experience lower stress and better health when they learn skills through caregiver training and participate in a support group. Participation in these groups can actually allow caregivers to care for their loved ones at home longer.
Emotional and practical support, counselling, resource information and educational programs about Alzheimer’s disease all help a caregiver provide the best possible care for a loved one. It is also very important for caretakers to try to add as much fun to the daily routine as possible. Play music, board games and get out in nature as often as you can.
Caregivers must focus on their own needs, take time for their own health and get support and respite from caregiving regularly to be able to sustain their well-being during this caregiving journey. This is the easiest thing for someone to say and yet it is probably the hardest thing to do. This is because it often hard to see beyond the care tasks that await caregivers each morning.
Something very important to consider are the most common feelings that both family and caregivers experience, such as, guilt and feelings of loss and anger. What are the reasons for this? Allow me explain.
Grief and Loss. When a person we love develops dementia, we already start to experience the loss of our loved one while they are still physically present. The changes in personality and their inability to function changes the dynamic and the connection we had as they just don’t seem like the person we used to know. For many, this is the beginning of a long term grieving process. It is difficult to have the roles reversed when you must adjust to being a caregiver of the parent who in the past you have always turned to for comfort and care.
Guilt. This feeling comes up when we think of the type of treatment given to the person in the past or when we feel embarrassed by some behaviour the person exhibits. Sometimes this feeling comes as a result of not wanting to bear the burden of caretaking.
It is common to feel guilty about past promises such as “I’ll always be with you or take care of you,” when these promises are not always possible or practical to keep.
Anger. This is a natural result of all the loss frustration and adjustments that are asked of you. Sometimes we are angry at having to deal with the burden of taking care of the person alone, while other family members don’t step up to help. We also get angry at the person with dementia for their often frustrating and difficult behaviours or at inadequate professional support services.
Alzheimer’s disease is sometimes called a family disease. This is because it is not a type of disease that can be handled by one person. It requires efforts from every member of the family and friends. It is very important to ask for help. Sit down with the members of your family and ask what they are willing to do to help. Give them ideas and suggestions. Don’t just assume that they know what you need.
It is also important to keep the family members informed. Remember, if you keep the lines of communication with your family and friends open, they will be able to understand more easily what you and your family member are going through. The better they understand, the more willing they’ll be to pitch in and help.