Dementia is a collective term that is used to describe the deteriorating mental health of an individual which has a huge impact on their quality of life. Dementia, basically, refers to a vast array of symptoms that are related to the person’s memory and cognitive skills.
Symptoms of dementia may vary from person to person but two or more of the following mental functions must be impaired for an individual to have symptoms of dementia;
- Communication and verbal speech
- Visual impairment
- Focus and attention span
Alzheimer’s is the most common type of dementia. The symptoms of dementia may start off slowly but they escalate over time as brain cells start to die.
The primary caregiver
The term ‘primary’ caregiver refers to an unpaid family member, friend, relative or neighbor who is responsible for providing full-time care to a patient with the chronic condition. From bathing to medicines to defecating as well as tube feeding, the caregiver is the sole provider of all the patient’s needs.
Alzheimer’s Association’s 2014 facts and figures report states that the caregivers have provided 17.7 billion hours to their loved ones with dementia.
Furthermore, a study by National Alliance for caregiving and AARP states that 44 million Americans, above the age of 18, are providing primary caregiving assistance to their loved ones. It is also revealed that 63% of the major, unpaid caregiving is usually done by women for their husbands.
Impact of being a primary caregiver
Dementia doesn’t just affect a patient, but also makes the primary caregiver with physical, emotional, financial and social liabilities. Unfortunately, primary caregivers of dementia patients have come to be known as secondary patients themselves.
Below are some of the challenges a primary caregiver faces as a sole provider for a patient with dementia;
Dealing with a dementia patient, especially when it is a loved one like your spouse or child, breaks your spirit. Even if the patient is a friend or a neighbor, seeing them go through such a difficult phase in life and looking after their growing needs is challenging to say the least.
Because a caregiver spends 100s of hours every month caring for a dementia patient, the depressing and stressful environment eventually takes a toll on the caregiver. Caregivers who spend continuous time with a patient are particularly susceptible to depression.
In fact, studies have reported a higher percentage of depression for primary caregivers than a non-caregiving person. Moreover, the caregiver’s depression increases as the patient’s health declines further.
It is also reported that the caregiver continues to suffer from depression even after placing the patient in a nursing home. Hence, the negative effects of being a caregiver do not leave the person even if the responsibility does.
The primary caregiver also faces spasms of severe anger mostly owing to the patient’s inability to do the simplest of tasks him/herself. Although their subconscious self knows that the patient is unable to remember even the most basic information, even the most patient caregiver is likely to experience bouts of anger in such troubled times. It is safe to say that you will become angry if a person asks you their name 10 times in an hour.
The spasms of anger give way to a chronic angry state of the caregiver for whom there is no light at the end of the tunnel and no positivity in life either.
- Physical health
The physical health of a primary health provider deteriorates with each passing minute. They become insomniacs, stop taking care of themselves, forget to eat on time, etc. Not to mention, caregivers are reported to have chronic heart conditions, aching joints and bodies, headaches, obesity, diabetes, high blood pressure, etc.
Studies also reveal that caregivers are at a heightened risk of infections and cancer as they have poor immune systems. On top of that, caregiving also complicates the wound healing process.
- Social withdrawal
Caregivers do not have the time, energy or inclination to socialize once they start tending to their loved ones. Even if they want to go out, they are hindered by the prospect of who will take care of the patient if they are not there. Hence, caregivers are not able to meet friends, travel and even the most basic activity like grocery shopping takes a lot of effort and planning to execute.
- Bad habits
It is reported that primary caregivers deal with their stress, anxiety and exhaustion in a negative manner. First and foremost, they are reported to have higher levels of substance abuse and alcohol consumption than those who lead a normal life. They also use more prescription drugs than a normal person would.
Secondly, primary caregivers tend to smoke more and also eat more fatty food than is good for their health. In fact, 72% of caregivers have been reported to not go to the doctor as much as they should have.
Caregivers form bad habits and do not take care of themselves as they do not have sufficient time or energy to take medicines and healthy food on time. What’s more, addiction to alcohol and smoking results due to the temporary feeling of calm and pleasure, usually obtained from any addictive item.
- Increased mortality
Dementia may be chronic and life threating for the patient, but it often takes the life of the primary caregiver first. It is reported that individuals, aged 66-96 years, who face caregiving duties have a 63% higher mortality rate than their peers of the same age who are not stressed with caregiving duties.
Undoubtedly, being a primary caregiver is a laborious and draining task which often goes unappreciated and unpaid. The best solution is to try to have two caregivers for the same patient so that responsibilities can be divided amongst one another. Even if there is no one to share the responsibility, the caregiver should prioritize his own health and medications to ensure a better quality of life for himself and consequently, also the patient’s.