Currently, more than one in five people in the United States are caregivers and have provided specialized care to an adult or child with special needs at some point in the past year. There are an estimated 53 million adults who require special caregivers, compared to approximately 43.5 million caregivers in the United States. A difference of more than 10 million since 2015, according to a report by The National Alliance for Caregiving and AARP.
Many of these people who require caregivers have dementia or Alzheimer’s; a task that has its challenges, due to the care recipients’ cognitively degenerative disease. While it is true that we usually use the terms Alzheimer’s and dementia interchangeably, it is important to clarify that they are very different; this can be crucial in the treatment and care for each patient.
Dementia is a common pathology that involves cognitive loss or impairment, while Alzheimer’s is a type of dementia. Although both are included under the umbrella term “dementia,” their symptoms and characteristics make them different diseases. For example, in the case of Alzheimer’s, the degeneration can lead to death in most cases, while dementia is not considered a direct cause of death.
In the latter case, the role of the caregiver becomes fundamental since cognitive, physical and emotional skills are affected more and more. According to Dr. Gayatri Devi, we should think of Alzheimer’s disease as a spectrum disorder. This means that each patient is unique and the way in which they experience the disease is also unique. Therefore, the care and attention will depend on the way in which it affects the patient. This requires greater effort and dedication from the caregiver, which can cause the caregiver to neglect their own well-being.
Here’s a list of actions you can take to care of yourself while providing care for someone suffering from dementia:
- Ask for help when needed. We all need help at certain times and it’s okay to ask for support from other family, friends, or other trusted individuals. Even seemingly small acts of help can make a big difference. For example, making a meal, visiting the patient, or taking them somewhere outside the house for a short time can reduce the caregiver’s workload.
- Take breaks every day. Caring for others can be exhausting and it’s important not to put your own well-being aside.
- Join a support group to share tips and experiences with other caregivers. Seek help from home health care agencies or adult day care services when you need it. Ask your doctor, check the internet, or contact your local chapter of the Alzheimer’s Association to find these groups. Use local and national resources to find out how you can afford additional resources or to receive temporary respite assistance services.
- Think about your own emotional health. Caring for a person with Alzheimer’s takes a lot of time and effort. Working as a caregiver for a person with Alzheimer’s can become even more difficult if the people you care for get angry with you, hurt your feelings, or forget who you are. This could make you feel very discouraged, sad, lonely, frustrated, confused or angry and it is necessary to emphasize that these feelings are normal. It is important to address them and think about your emotions. Repeating positive affirmations can help you manage in times of stress. For example:
-I’m doing the best I can.
-What I’m doing would be hard for anyone.
-I’m not perfect and there’s nothing wrong with that.
-I can’t control some of the things that happen.
-I will try to seek help from a counselor if caregiving becomes too much for me.
- Remember why you chose to care for the person with Alzheimer’s and the encouraging things that happen during daily care. These can include good feelings about the person you care for, support from compassionate people, or times you can spend doing the things that interest you or enjoying and sharing your hobbies.
- Finally, you can maintain a connection with “something bigger than power”. This can be a belief in a higher being, religious beliefs, or a belief that something good comes from every life experience.
References:
Cuidado especializado para personas con Alzheimer o demencia
El cuidado de los seres queridos en Estados Unidos en el 2020
https://www.nia.nih.gov/espanol/brindar-cuidados-durante-enfermedad-alzheimer-cuidarse-si-mismo
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