Dementia and our aging population

Advances in health care have allowed that the fastest growing segment of the population is of people over the age of 85. Unfortunately, the possibility of being diagnosed with dementia also increases with age. As medical technology improves and physical health gets better and better into later years, the life expectancy of a loved one who has dementia will be longer and time spent needing care will be longer as well. That means that as seniors keep getting older, their partners will be able to care for each other well into their later years. As lifespans increase, so will the amount of people coping with caregiver stress and dementia.

Increased stress for caregivers

Declining cognitive functioning affects the relationship between the caregiver and loved one. Dementia and confusion severely limits the ability to interact with the environment on a very basic level. Changes can happen over time or they can happen very quickly. It is a heart wrenching process to watch someone forget how to accomplish basic day to day functions, like getting in and out of a car. The caregiver recognizes changes in the ability to complete previously easy tasks and takes on more and more responsibilities as necessary. The caregiver takes on all responsibilities that may have been shared previously. That may involve cooking, cleaning, nursing, tending to financial matters, providing constant supervision, entertainment, emotional support and a social outlet.

Unpredictability of dementia increases caregiver stress

The caregiver copes with the changes in the dementia patient as needed. It is a very stressful time sometimes without any understanding of what may lie ahead or the progression involved. Dementia and neurological conditions can be difficult to diagnose and can take a very individual and unpredictable pattern. Consequently, it can be very difficult for medical professionals to provide guidance and support with emotional problems that have to do with important health related decisions.

Many times caregivers and the medical team have to assess what is and it is not possible for the loved one on a day-to-day basis. Sometimes dementia patients can stay at a certain level of cognitive functioning for a long period of time, and other times the decline can be very fast. Not knowing what may or may not happen is a stressor that compounds all other very stressful aspects of caring for a dementia patient as it makes planning for the future very difficult.

Relationship changes in caregiving

The caregiver grieves for the person their loved one was and what they will never experience again as a couple. Not having the emotional support from the one person who was always there for them while watching them fade away is a very lonely process. Grief for the person that is gone mentally and emotionally and the relationship that is no more can involve anger, and guilt over those feelings of anger, frustration and stress. It is difficult to allow feelings of anger, considering the loved one has no control over what is happening to them.

If the relationship between the caregiver and patient with dementia was strained in any way or if the power dynamic was not balanced, that can put more of an emotional burden on the caregiver. The emotional toll of caregiving can be intolerable, depending on whether mental health issues have been present in either partner, or if psychosis becomes an issue. Any violence, intimidation or aggression is not acceptable and is an indication that alternative care is necessary. An important part of assessing whether a caregiving situation is acceptable is if the caregiver is aware of his or her own limitations and can be realistic about stress management and crisis management.

Managing caregiver stress and dementia

The reality is that the caregiver is on duty 24 hours a day and there is no time for other activities. Prior to caregiving, the family member was able to socialize, relax and have fun. In contrast, the stress level in caregiving is very high due to increased responsibilities, the probability of falls, emergency room visits and serious medical events. Managing caregiver stress and dementia involves prioritizing your own needs in order to be able to take care of the other person. Emotional self-care is particularly difficult for caregivers of dementia patients due to overwhelming fear and grief.

Dementia patients experience an incredible amount of confusion that is frightening and elicits feelings of despair, which is part of the tragedy of the disorder. The caregiver empathically experiences the suffering of the dementia patient, making the need to take breaks from the situation even more imperative. The caregiver must make time for breaks from the stress of taking care of the loved one, allowing for relaxation, socializing, and vacations and trips. Guilt makes taking breaks from the stress and heartache impossible and intolerable stress can lead to anxiety, depression, and even physical health problems.

Financial responsibilities of caregiving

The financial burden of caregiving can be left for the caregiver to manage if those issues were not discussed prior to cognitive decline. The caregiver must decide when to get help, what kind of help is affordable and what is worthwhile to do, increasing feelings of responsibility over an unmanageable situation and multiplying feelings of guilt. The caregiver must ask for help from relatives if that is an option and then will have to cope with their involvement and opinions in caregiving.

The stress of having to worry about finances and how finances affect whether care at home is possible or whether a care facility is necessary is an incredibly difficult issue that can be avoided by having detailed discussions of end-of-life matters while seniors are able to describe their preferences if and when cognitive impairment becomes a problem. If the patient’s wishes have been detailed, the caregiver has a better ability to make decisions and will not be so weighed down with guilt over how an impossible situation will be managed. Improving the ability to cope with caregiver stress and dementia necessitates as much family support with these decisions as possible.

Accepting help to reduce caregiver stress

With proper planning and good communication caregiving can be prepared for in later years. Very difficult decisions are part of the aging process but managing fear earlier can help avoid feelings of despair later. If you or a loved one are facing these questions or are trying to manage an unmanageable situation, please know that there are mental health professionals available that understand what you are going through and can support you through your caregiving journey.

Rebeca Bright, PsyD

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