Many families start in the denial stage when their parents begin the early stages of dementia. No one wants to accept a negative diagnosis as it represents separation, loss, struggle, loneliness, and changes. However, denial can impede a well timed diagnosis and treatment, resulting in exacerbated symptoms and a lower standard of living for individuals with dementia.
Your parent’s situation can potentially lead to increased levels of stress and tension within the family. Addressing denial and providing support to both the individual with dementia and their family members helps to smooth out the process. Learn how to handle the diagnosis and move out of denial and into assisting mode because your parent needs you now.
Family members often experience resistance or difficulty in accepting the diagnosis of dementia at first. The diagnosis will change the day-to-day operation of their life by creating fear, social stigma, grief, and more. Furthermore, the parent/child relationship dynamic changes, which can lead to a myriad of emotions. Not to mention, the diagnosis requires a steep learning curve of new information ready to interfere with already busy lives as elderly parent needs 24 hour care and may require professional dementia care.
Additionally, they may feel overwhelmed by the responsibility of providing care for someone with dementia. However, denial and resistance are typical responses that adult children experience when faced with challenging situations. These reactions may necessitate patience and assistance to work through.
Husbands and wives do not want their marriage and relationship to change, especially from a negative cause such as a dementia diagnosis. The disease will change the entire dynamic of their relationship from partners to one needing more care than the other and the inability to provide the same level of care and concern. Partners of a spouse with dementia may experience a fear of losing memories, personality, and the abilities of their loved one due to the progressive nature of the disease.
Moreover, it is common for partners of individuals with dementia to experience feelings of guilt or blame. This may be especially true if the partner has a history of poor health habits or has observed their loved one’s cognitive decline over a period of time. Denial is a frequently observed response to the initial signs of dementia, especially during the early stages of the condition.
Family members often find it challenging to accept a dementia diagnosis because it forces them to face their future and the potential challenges associated with caring for a loved one with dementia. Caregivers often struggle to accept a diagnosis due to the situation’s enormity and apparent difficulty.
Due to their ignorance about the disease’s course, caregivers may suffer from a fear of the unknown, which can cause anxiety and uneasiness. The diagnosis often makes an adult child feel trapped caring for an elderly parent.
Refusing to accept a diagnosis of dementia can lead to various risks and adverse outcomes for everyone involved. Here are the most common dangers of denial of dementia diagnosis:
As dementia progresses, the person may be unable to make proper decisions about their care and all other aspects of their life. Denial can hinder a family’s ability to plan for legal and financial arrangements to care for their elderly parent. Ambiguity can cause misunderstandings, disputes, and legal issues leading to disputes within the family.
Legal capacity—the ability to make legally binding decisions and actions—can deteriorate with dementia. Getting an early diagnosis allows the person with dementia more time to make the decisions they prefer about their health and estate. They will also be able to choose who makes their decisions for them going forward.
Refusing a dementia diagnosis can have major financial and other consequences, such as postponing financial preparation and making important decisions like creating a trust or power of attorney. Delaying financial planning can cause family financial stress, loss of financial planning opportunities, and significant losses.
On top of all the other problems, denial can lead to family discord, starting with opposing views on care and financial matters. Family members may argue about keeping the parents home or putting them in a nursing home, leading to delayed care for the affected individual. From there, communication suffers as arguments ensue from a lack of a united form and well-coordinated care. Overall, the love and positivity in the family may be replaced with anxiety.
Refusing a dementia diagnosis might endanger the health and safety of a parent with dementia. Adult children may continue to allow their parents to live alone despite the fact they can no longer care for themselves adequately. Also, they will delay much-needed medical treatments and supportive services.
Furthermore, medication management may deteriorate as dementia progresses. Denial may prevent families from recognizing the signs of poor medication management and intervening to ensure the patient receives the right drug, in the right dose, and on time. The parents become more likely to fall, get lost, or hurt themselves without proper safeguards in place. Their mental health will decline, too, as none of their needs are met.
Denial of a dementia diagnosis can result in unintentional harm to others, including loved ones, acquaintances, or strangers. When an elderly parent with dementia goes out into public by themselves, they can unintentionally hurt others. For example, they may harm someone while driving their car to the grocery store. Furthermore, they could become aggressive or agitated with strangers who try to help them or even walk in front of a moving vehicle.
Denying a diagnosis of dementia can have negative consequences, including missed medication and inadequate nutrition. People with dementia cannot remember to take their medications or to eat a healthy diet. Some even forget to eat together. Denial can hinder families from recognizing and addressing these issues, potentially resulting in adverse health outcomes and decreased quality of life.
As difficult as it may be to care for a loved one with dementia, it is essential to put the individual at the center of your attention. Educating yourself about the illness, learning to actively listen, and keeping a good outlook will all help you gain acceptance so you can maintain control over the situation. Once you understand and accept the illness, you can start the helping and healing process. Remember, once a parent gets dementia, it affects many people’s lives, but knowing can help mitigate problems.
Learning about dementia and its causes, progression, and treatment options can help you better care for and support your parents living with the disease. People with dementia need patience, flexibility, and adjusted expectations for their unique presentation of the disease. Learning about the disease can give you insight into what is going on in your parent’s head.
Often they feel alone, overwhelmed, confused, and more, all with no real way to communicate their problems or emotions. With a better understanding, you can become more empathetic to their plight. You will be able to show love better through care and comprehension, allowing for a more fulfilling relationship for you both.
Caring for a family member with dementia can be a complex and demanding situation requiring patience and perseverance. Family members undergo a variety of emotional responses, such as denial, anger, sadness, and fear, as they grapple with the diagnosis. Allowing individuals the necessary time and space to process their emotions and adapt to a new reality is crucial.
Keep in mind that accepting a diagnosis of dementia is a gradual process and usually follows the five stages of grief – denial, anger, bargaining, depression, and acceptance. Some family members will move through the stages faster than others, and both are okay and normal. Focus on fostering communication within the family to cope with the diagnosis and remain supportive of each other.
Allowing sufficient time for family members to come to terms with a dementia diagnosis allows for a nurturing and encouraging atmosphere for your loved one and can establish a robust basis for their care and overall health. Right now, family needs each other even more, so keep communication open and honest with respect for everyone.
Communicating with an out-of-town sibling about your aging parent’s illness and care requirements calls for tact and clarity. Start by conveying the gravity of the situation and explaining your parent’s condition in a few simple words. Give them some time to process and do some research. They may want to talk to the doctor, so give them the information if possible and keep them in the loop of any new developments.
When they are ready, begin discussing what steps you have taken and which steps are next. Consider and listen to their opinions working as a team as much as possible. Remember, siblings who live far away may not be able to contribute in person but can help in other ways, such as organizing financially, legally, or communicating with their parents daily.
Always keep empathy and understanding in mind while you have this discussion. Try to be understanding and helpful if your brother is experiencing feelings of helplessness or being overwhelmed.
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