ALZHEIMER'S DISEASE - WHAT IT IS AND HOW TO CARE FOR & FIND HELP FOR YOUR LOVED ONE

Some neurocognitive disorders associated with aging include Alzheimer’s, Dementia, and Delerium. I want to talk to you today about Alzheimer’s, including what it’s about, what some common symptoms are, and what treatments are available. We will discuss some strategies we can use to promote the individual’s and the caretaker’s health, well-being, and quality of life. Many local resources/services are available to help individuals and families coping with Alzheimer’s disease.

Alzheimer’s disease is a progressive brain disorder that impacts memory, thinking and language skills, and the ability to carry out the simplest tasks. It is the most common cause of dementia. Dementia is a term used to describe symptoms such as loss of memory, loss of judgment and other intellectual functions, which can be caused by Alzheimer's.

Family members, friends and neighbors can share responsibilities and support the main caregiver. Professionals like geriatric care managers can help you find helpful services. Health care providers understand the disease and the level of care needed and can offer suggestions on how to help. Mental health or social work professionals can provide emotional support and find ways to help deal with caregiver stress.

Connecting with people who provide support is an important part of caregiving. You can reach The Alzheimer's Foundation of America (AFA) by calling 866-232-4484. They offer free Alzheimer’s and dementia support groups, led by licensed social workers who are trained in dementia care. These groups allow caregivers to connect, share and support one another.

Some common warning signs of Alzheimer’s disease are:

aMemory loss, especially of recent events, names and places

aConfusion about time and place

aStruggling to complete common tasks such as brushing their teeth

aTrouble finding appropriate words

aDifficulties in judging situations

aChanges in mood and personality

There are three stages of Alzheimer’s disease. They are early (mild), middle (moderate) and late (severe):

aIn the early (mild) stage, they may forget words or misplace objects, forget things they just read, ask a question over and over, have trouble making plans or organizing and forget names.

aIn the middle (moderate) stage, they may have increased memory loss and confusion, problems recognizing family and friends; constantly repeat motions, stories, or favorites (such as foods, places, songs; they may have less ability to perform tasks such as planning meals, paying bills; and may lose interest in hygiene and appearance and need help choosing clothing for the season or occasion.

aIn the late (severe) stage, they may have near total memory loss and only recognize faces but forget names and they may mistake a person for someone else. They might have delusions, like thinking they need to go to work, even if they dont work. They may need to hold something close for tactile stimulation, nurturing, companionship and comfort. They may lose the ability to do things like eating, walking and sitting up, and they might not know when they’re thirsty or hungry. At this point, they’ll need help with all daily activities.

There are growing numbers of people living with Alzheimer’s and dementia being admitted to acute care hospitals. Hospitalization can be difficult and is often associated with negative outcomes, but nurses have been making efforts to design, implement and evaluate interventions to improve nursing care of people living with these diseases (Moody et al., 2024).

Personal caregivers have an important role in supporting and caring for loved ones with Alzheimer’s and dementia. Caregiving can be complex and may lead to them dealing with psychological, physical, social and financial stress from caring for a family member with Alzheimer’s and dementia (Reid and O’Brien, 2021).

Alzheimer’s is a devastating progressive disease and can be extremely difficult for not only the person with this disease, but for the family and loved ones as well. It’s important that the caregiver realize they’re not alone. Support groups can be a wealth of information and assistance in this very critical time of need for everyone involved.

 

References

Alzheimer’s Foundation of America (2023). Alzheimer's Foundation of America | About Alzheimer’s Disease and Dementia.

Moody, E., McDougall, H., Weeks, L. E., Belliveau, A., Bilski, P., Macdonald, M., Williams, L., Khanna, I., Jamieson, H., Bradbury, K., Rothfus, M., Koller, K., & Adisaputri, G. (2024). Nursing interventions to improve care of people living with dementia in hospital: A mixed methods systematic review. International journal of nursing studies, 158, 104838. https://doi.org/10.1016/j.ijnurstu.2024.104838.

Reid B, O’Brien L (2021) The psychological effects of caring for a family member with dementia. Nursing Older People. doi: 10.7748/nop. 2021.e1295. Published online: 11 August 2021. The psychological effects of caring for a family member with dementia.

PREPARING FOR AN OLDER ADULT TO BECOME A MEMBER OF YOUR HOUSEHOLD

 

Let’s talk about some things to consider when preparing for an older adult to become a new member of your household. I researched this subject extensively and was surprised to find that most of the resources were about transitioning an elder into an assisted living facility or a nursing home. I want to discuss the possibility of moving an elderly family member into your personal home, with you and your family, if you have one.

Perhaps you want to be closer to them and share as much time as you can with them in their old age. Perhaps they may need help with daily activities, but don’t need consistent medical care. Perhaps they do need routine medical care, and you want to be able to facilitate home health visits in your home, where you can oversee things. Perhaps you aren’t financially able to move them to an assisted living facility, but you can accommodate them at home. There are so many different situations and reasons you may want to make this move! There are also numerous things to consider when evaluating whether it would be a smart move for everyone, and if it is even feasible. We will discuss these things here today. I hope you find it helpful!

First, I want to discuss how I would approach things if I were personally confronted with this issue. I think the main thing that would concern me about sharing my home with a parent or grandparent on a long-term basis would be that I would wonder whether I was able to meet their needs. An older loved one can have many needs and if you are sharing the same living arrangements, they may assume that you will be available to provide for them on so many levels. While you may certainly want to do that, it’s often not possible.

Work obligations and family needs and social responsibilities can often leave you feeling overextended, and when you add a dependent and needy elder to the mix, it can become overwhelming. Even if they’ve planned to have Home Health visits, or can still manage many things themselves, they will undoubtedly have some level of expectations and demands on your time and resources.

In my personal situation, I am single and live alone with my teenage son, who will be a senior in high school this year. My focus is on keeping up the house, paying the bills and providing, and most importantly, making sure that my son is cared for and doing well in school, as well as helping him to prepare for college soon. I am also a college student, so I must devote a lot of time to that as well. We live in a small house, so it would be a big adjustment for us to accommodate a family member. At the very least, we would need to clear out our family room at the back of the house and transform that space into a bedroom. This would require moving our sewing and craft areas, our piano and drums, and our cats’ litter box. We would have to purchase a bed, a dresser, and come up with some sort of closet unit. I don’t know if my loved ones are allergic to cats or not, so that may be an issue we’d need to consider. It would be a big adjustment for us, especially because our house is so small and I have no other support, physically, emotionally, or financially.

If you’re considering moving an older adult into your household, you’d need to find out whether they will need wheelchair access or other mobility aids and implements, such as grab bars in the bathroom. If there are stairs in your household, can they climb them?  If you need a wheelchair ramp or to widen a doorway to enable wheelchair access, or to elevate a toilet, or install grab-bars, etc., are you able to provide these things?

You will need to learn about their dietary requirements and how you will accommodate them. Also, do they still drive, or will you or someone else be providing transportation to doctor visits and social events? You would have to keep in mind what a huge adjustment this would be for our loved one. They may deal with depression with the loss of their autonomy and self-sufficiency or feel like they are imposing or disrupting our lives. We would have to take extra care to make sure they didn’t feel like they were being a burden to us or causing us any harm in any way. We would want to uplift, honor and provide for them as best as we can. There may be times when you feel burdened with all the responsibility and loss of freedom. You may find yourself feeling like you need care as well, and self-care is an important factor in caring for others. You will need to think about how you will facilitate time for self-care.

Three family structures that are different from mine would be a traditional family unit that had a husband and wife and children; a single person family with no dependents; and a single parent family with children and perhaps other family members living together. Families can have one working adult or two, and adult children or young school-age children. Some grandparents are raising their grandchildren. Many cultures have multiple generations living together. This is becoming more popular due to the strained economy and an aging population. So, you see, there are many variations of the modern-day family unit. Every situation is unique and should be addressed individually.

A counselor, pastor, case manager, etc., can provide insight and ideas on how to best accommodate everyone’s needs during this time. You should discuss ahead of time how you will handle groceries, cooking, laundry, parking, etc. It is essential to plan and discuss expectations and arrangements. Will they contribute anything toward groceries and utilities? Will they want to have visitors, and if so, what are their privacy needs?  Who will handle their cleaning and other household needs and responsibilities? These are just some considerations. It’s helpful to understand what each other’s daily activities look like. Who shops for groceries, cooks, and who does the dishes? Is laundry done weekly, or as needed, and will you do them separately or combine them? All these unanswered questions can lead to misunderstandings and friction.

Open communication is probably the most essential element to successful arrangements. Any issues or grievances can be resolved agreeably with open, honest and productive communication. Strategies to improve communication must incorporate an understanding of patient needs. A structured approach which considers timing, privacy, location and appropriateness for patients and families is needed (Bucknall et al., 2020).

According to Schiebl et al., (2019), we should consider the following when planning to move an elder into our household, or into an assisted living facility:

• Resilience enables very old people to adapt following relocation. Resilience is not something we can instill on an adult prior to them confronting change or issues. However, the level of resilience should be considered when planning events such as relocating your loved one to a new residence and implementing care.
• Some very old people prefer having company in residential care to living alone. Isolation can lead to loneliness and depression, which can be detrimental in so many ways. Consider how you can help to avoid these feelings.
• Moves that end life-long local connections increase isolation and loss. Consideration should be given to promoting socialization and accommodating visitors.
• Establishing connections with people or place ahead of a move is beneficial. Are there senior clubs or adult day care type facilities where your loved ones can socialize and participate in activities?

Personally, there was a period of two years when my middle school aged son and I moved in with my daughter and her husband. We learned a lot during that time. We moved in with my eldest daughter and her husband to help raise their four children while they worked and finished college. This required many changes. I had to sell our house, and my son had to change schools. Selling our house involved repairs, staging, boxing, selling things and moving the rest to storage. We had to adjust to being without our usual comforts and acclimate ourselves to having bedrooms as our only private spaces. Being mindful to their house rules and having constant activity, which included four small children, required patience, flexibility and sacrifices from all of us. However, it worked out well because we had open discussions, shared responsibilities, and timelines and plans for the next steps. You may want to consider some of the things we incorporated that helped us to have a successful living situation.

First, make sure to discuss ahead of time things such as everyone’s expectations, needs, responsibilities, routines, schedules, sleep patterns, space requirements, etc. Consider whether any modifications need to be made to the space they’ll occupy and use, scheduling visits with other family members, day activities and places where they may participate in socialization.

Evaluate all the variables and considerations and talk about how you will handle requests, disagreements, special needs, etc. It’s best to discuss potential areas of conflict as soon as they arise to resolve them and find amicable solutions. I recommend posting schedules and reminders, so everyone is aware of the various schedules and responsibilities for social events, work, cleaning, laundry, dinner menus, when bills or their contribution is expected, etc.

Having clear and concise expectations in writing for everyone to see reinforces the rules, increases awareness for everyone, and also prevents anyone from feeling left out of the loop. A little discussion and planning go a long way. Organization and transparency are the key.

I recommend trying to eat one meal together a day, preferably dinner, when things are less rushed. This is a great opportunity to not only bond, but to also evaluate how things are going with everyone. Further, I cannot emphasize enough how helpful it is to have a weekly “meeting”. This can be a conversation over Sunday brunch, or just a gathering in the living room, but everyone should plan to spend 15 minutes once a week to share any news, present any requests, suggest ideas, resolve conflicts and clear the air. This is such a helpful and productive way to share and resolve issues that could otherwise linger, fester and may result in resentment, conflict and emotional outbursts. Some like to start the conversation in prayer and thanks, taking turns to talk and vocalize appreciation for kindness that might otherwise go unrecognized. These little gestures can go a long way when a family member is feeling overworked, overwhelmed, underappreciated or going through a hard time.  It’s the little things that make people feel welcome, loved and appreciated.

I found some helpful resources, such as AARP.org, which provides helpful information and resources for that can facilitate this transition. You can find it here: AARP Resources for Caregivers and their Families. They also provide a caregiving organizer tool, resources and more in one place. You can access it here: AARP Care Connect - Simplifying Your Caregiving Journey.

This YouTube channel, titled “A Place for Mom”, provides helpful information, tips and insight to the subject of caring for your elders. This video, titled “8 Essential Tips for Moving a Senior Parent into Your Home / A Place for Mom” can be found here: https://youtu.be/zH4ltHbbT6k. Some helpful things addressed in this video include: assessing your elder’s level of independence; considering whether you can care for them; whether you can provide proper care; ensuring the safety of your home; adapting to relationship changes; covering necessary costs; remembering your own well-being; communicating effectively with family; and preventing social isolation. This channel is a wealth of information.

In summary, it’s important to think about all the considerations regarding moving an elderly loved one into your home. Planning and preparation help you to do what’s right for everyone involved. Most importantly, I hope you can show up for them in the best way you can, as they did for you. Be in the moment, and don’t let anything get in the way of expressing your gratitude and love for them while you can. You never know whether you’ll get the chance again. 

References

Scheibl, F., Fleming, J., Buck, J., Barclay, S., Brayne, C., & Farquhar, M. (2019). The experience of transitions in care in very old age: implications for general practice. Family practice, 36(6), 778–784. https://doi.org/10.1093/fampra/cmz014. 

Tracey K. Bucknall, Alison M. Hutchinson, Mari Botti, Lauren McTier, Helen Rawson, Danielle Hitch, Nicky Hewitt, Robin Digby, Mariann Fossum, Anne McMurray, Andrea P. Marshall, Brigid M Gillespie, Wendy Chaboyer, Engaging patients and families in communication across transitions of care: An integrative review, Patient Education and Counseling, Volume 103, Issue 6, 2020, Pages 1104-1117, ISSN 0738-3991, https://doi.org/10.1016/j.pec.2020.01.017.(https://www.sciencedirect.com/science/article/pii/S0738399120300446).