As the number of people with dementia grows, we must face the fact that statistically such a disease can happen to us. We’re living longer and longer lives. That means asking ourselves tough questions about the kind of care we want (and don’t want) BEFORE cognitive decline begins.
I have some clients diagnosed with dementia, who will live with this disease for a long time. They chose to move into memory care facilities and “let nature take its course.” I honor and support them. I also have clients who make different choices and I honor and support their right to do that as well.
How Do You Want to Handle Dementia?
Let’s talk frankly about this topic. When I search “advanced dementia” online I see pictures of happy seniors engaged in fun activities. I don’t see a lot of that in real life.
Too many people living with advanced-stage dementia are hunched over in wheelchairs being fed by loving caregivers but have little or no awareness themselves. I watch sadly as they slowly forget everything, and eventually, their body forgets how to swallow.
When this happens, they typically inhale food or drink into their lungs. This can result in aspiration pneumonia, which is how many people with advanced dementia die.
If you have the money, religious beliefs, or inclination to live and die this way, that is your right. When I talk to people who don’t have a dementia diagnosis, most say they don’t want to live like that. And yet most of them will because they don’t take proactive steps to fill out advance care directives, choose a reliable health proxy, and make their wishes known.
If you don’t plan ahead, you won’t have the end-of-life experience you want.
Consider Various Aspects of Cognitive Decline Care and Preferences Now
Here are some questions to ask yourself now, before a diagnosis:
- What are my preferences for medical treatments and interventions if I am diagnosed with dementia?
- Do I want aggressive medical interventions, or do I prefer a more comfort-focused approach?
- Are there specific treatments or medications I want to avoid?
- What activities and experiences are most important for my well-being?
- Where would I prefer to live if I have cognitive decline?
- Do I want to remain at home for as long as possible, or would I consider moving to an assisted living facility?
- Are there specific assisted living or nursing home facilities that I prefer or want to avoid?
- Do I have a legal representative who can make decisions on my behalf?
- Have I documented my wishes regarding the use of my financial resources for medical care and other needs?
- What are my preferences for end-of-life care, including issues like resuscitation, artificial nutrition, and hydration?
- Under what conditions would I want to stop or continue life-sustaining treatments?
- Do I have specific wishes regarding organ donation or autopsy?
- How would I like information about my condition to be communicated to me?
- Are there specific cultural or spiritual considerations that should be taken into account in my care?
Review and update your advance directives whenever your preferences and circumstances change. Discuss your wishes with your healthcare providers, family, and legal representatives. This can help ensure that your advance directives accurately reflect what you want and provide guidance for your care if you are unable to make decisions for yourself.
Declining Treatments, Food, and Water
If you don’t want to be fed in certain situations, it’s essential to communicate your wishes clearly and document them in your advance directives. If you do not want illnesses like pneumonia or urinary tract infections (UTIs) treated with medication, you should also express these preferences in your advance directives and discuss them with your healthcare providers.
Here are some considerations and steps you can take:
Clearly Express Your Wishes
In your advance directives, clearly state your preferences regarding artificial nutrition and hydration (such as tube feeding) or being fed by others. Have a conversation with your healthcare providers about your decision. Make sure they understand your reasons and that your wishes are documented in your medical records.
Clearly articulate in your advance directives that you do not wish to receive medication for specific illnesses, such as pneumonia or UTIs, after a dementia diagnosis. Provide detailed instructions regarding the conditions under which you do not want treatment. Do you want to be kept comfortable? Make that known as well.
Appoint a Healthcare Proxy
Designate a healthcare proxy or healthcare power of attorney. This person will be responsible for making medical decisions on your behalf if you become unable to do so. Ensure that your proxy understands your preferences regarding feeding, and treatments, and is willing to advocate for your wishes.
Provide Context for Your Decision
Clearly explain your reasoning for not wanting treatment in your advance directives. This can include factors such as the impact on your quality of life, personal beliefs, or a desire to avoid certain side effects associated with medications.
Be aware of the legal aspects of your decision. Laws regarding advance directives and end-of-life care vary by jurisdiction. It’s important to ensure that your directives align with the legal requirements of your location.
Communicate, Communicate, Communicate
Discuss your decisions with your family, loved ones, and those close to you. Open communication before cognitive decline begins helps ensure that everyone understands your wishes and can reduce the potential for conflicts during difficult times.
It’s crucial to involve your healthcare team and legal representatives in the process to ensure that your wishes are understood, documented, and legally valid. Additionally, consider having these discussions early on, so your preferences are well known to those involved in your care. If you have specific concerns or questions, consulting with a healthcare professional or legal advisor can provide further guidance tailored to your situation and location.
Regularly Review and Update
Periodically review and update your advance directives to reflect any changes in your preferences. Keep in mind that your views on medical treatment may evolve, so it’s important to ensure that your documents accurately represent your current wishes.
The Impact of Cognitive Decline on Loved Ones
If you don’t want to make advance directives for yourself, make them for your caregivers. Consider their physical and mental health when making decisions that impact them. Caring for someone with dementia can be emotionally and physically demanding, and caregivers often face a range of challenges.
Several studies have examined the impact of caregiving on the health and well-being of those providing care to individuals with dementia. Here are some common findings:
Increased Stress and Burnout
Caregivers of individuals with dementia often report high levels of stress due to the constant demands of caregiving. The unpredictable and challenging behaviors associated with dementia can contribute to caregiver burnout.
Physical Health Implications
Many caregivers experience declines in their physical health. The stress of caregiving has been linked to conditions such as cardiovascular problems, weakened immune system function, and increased vulnerability to illnesses.
Mental Health Challenges
Caregivers are at a higher risk of mental health issues, including depression and anxiety. The emotional toll of witnessing a loved one’s cognitive decline and dealing with the associated challenges can contribute to these issues.
The demands of caregiving can lead to social isolation as caregivers may have less time for social activities. The progressive nature of dementia can also make it difficult for caregivers to engage in activities outside the home.
The financial burden of caregiving can be substantial, especially if the caregiver needs to reduce working hours or quit their job to provide full-time care. Expenses related to medical care, home modifications, and other caregiving needs can contribute to financial strain.
Impact on Relationships
Caregiving can strain relationships. The demands of caring for a person with dementia may lead to tension and conflicts within families. Additionally, caregivers may find it challenging to maintain relationships outside of the caregiving role.
Many caregivers experience disruptions in their sleep patterns due to the demands of caregiving, as well as the stress and worry associated with the role.
Higher Risk of Chronic Conditions
Some studies suggest that long-term caregivers may be at a higher risk of developing chronic conditions themselves, potentially due to the cumulative impact of stress on their health.
In the End
Give careful consideration to the kind of end-of-life experience you want before cognitive decline begins. Do this for yourself and your loved ones. If you want to live with dementia until the end comes naturally, put plans in place to ensure that happens for you.
And if you do not want that experience, put plans in place now to ensure that reality as well.
If you need support for yourself or your caregivers or would like more information about advance directives, please don’t wait. Contact me at Anitya Doula Services today.