We see the purple and gold flags on walk days and hear the stories from daughters/sons/friends talking about their loved one who is dealing or dealt with the disease of Alzheimer’s. Most of us know that this is a disease that attacks the brain and takes them away from us mentally but the physical aspect of Alzheimer’s may not be something we know or think about. The Alzheimer’s association was started in 1980 as a way of bringing awareness and support to those affected. I sat down with Kristi Mroz who is the program manager for the association to talk more about the symptoms we may not know about.
1. What is your role with the Alzheimer’s Association?
- I am a Program Manager with the Greater Maryland Alzheimer’s Association. My role is to provide caregiver education, while building our network of volunteers and community partners who help the association drive our mission forward.
2. We know the mental toll that this disease can take on a patient but what about the physical?
- From slow walking to poor balance, there are many physical symptoms that can manifest themselves as time wears on. Those changes may include:
Loss of balance and coordination
Shuffling or dragging feet when walking
Trouble standing or sitting in a chair
Weak or stiff muscles
Difficulty controlling bladder and bowels
Uncontrollable twitches or seizures
Difficulty chewing and swallowing
These challenges usually cause those with Alzheimer’s to lose the ability to take care of themselves, leading family and caregivers to enlist home health care for additional support. If you are a caregiver for your loved one, you will be called upon to help them with basic tasks such as brushing their teeth, washing their hair, and dressing them every day.
In the early stages, very little is physically different about the person. Once the middle stage creeps in, muscle ability starts to decline. The mental capacity to interpret the body’s signals starts to take decline. In the late stages of the disease, physical ability becomes significantly compromised, with limited walking and range of motion.
3. What is important for a caregiver to know when caring for someone with Alzheimer’s disease/dementia?
- As a caregiver, you likely have many responsibilities. It is important to have a support network to take care of your own well-being.
- Here are 5 tips to help you cope:
- Manage your level of stress. Stress can cause physical problems (blurred vision, stomach irritation, high blood pressure) and changes in behavior (irritability, lack of concentration, change in appetite). Note your symptoms and discuss with a doctor, as needed. Try to find relaxation techniques that work for you.
- Be realistic.The care you give does make a difference, but many behaviors can’t be controlled. Grieve the losses, focus on positive times as they arise, and enjoy good memories.
- Know you’re doing your best. Remember that the care you provide makes a difference and that you are doing the best you can. You may feel guilty because you can’t do more, but individual care needs change as Alzheimer’s progresses. You can’t promise how care will be delivered, but you can make sure that the person with the disease is well cared for and safe. For support and encouragement, join ALZConnected, our online caregiver community.
- Take a break. It’s normal to need a break from caregiving duties. No one can do it all by themselves. Look into respite care to allow time to take care of yourself.
- Accept changes as they occur. People with Alzheimer’s disease change over time and so do their needs. They may require care beyond what you can provide on your own. Becoming aware of community resources and care options — from home care services to residential care — can make the transition easier. So will the support and assistance of those around you.
4. Can you explain what Lewy body dementia looks like versus dementia?
- Dementia describes a group of symptoms associated with a decline in memory, reasoning or other thinking skills. Many different types of dementia exist, and many conditions cause it. Mixed dementia is a condition in which brain changes of more than one type of dementia occur simultaneously. Alzheimer’s disease is the most common cause of dementia, accounting for 60-80% of dementia cases. Dementia is not a normal part of aging. It is caused by damage to brain cells that affects their ability to communicate, which can affect thinking, behavior and feelings.
- Lewy body dementia (LBD), the second most common cause of progressive dementia, is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function because of abnormal microscopic deposits that damage brain cells over time. Movement symptoms, such as fluctuations in attention or alertness, problems with movement including tremors, stiffness, slowness and difficulty walking, are more likely to be an important cause of disability early in Lewy body dementia than in Alzheimer’s, although Alzheimer’s can cause problems with walking, balance and getting around as it progresses to moderate and severe stages.
5. What is the biggest piece of advice you would give someone newly diagnosed or to the caregiver about to take on caring for their loved one?
- Allowing time to process the diagnosis is an important first step to adjust to this “new normal.” The process of acceptance is just as important for the care partner as it is for the newly diagnosed person. No two people deal with the diagnosis in exactly the same way. There is no right approach and some days may be more difficult than others, but don’t be discouraged.
- A great place to start is the Alzheimer’s Associations 24/7 Helpline, 1-800-272-3900. Through this free service, specialists and master’s-level clinicians offer confidential support and information to people living with the disease, caregivers, families and the public. There are also community programs, support groups and online social networks that provide the opportunity to learn from others who have a friend or family member with dementia. We often hear care partners say that they are looking for support from people who “really understand because they’ve been there, too.”
If you or a loved one would like more information please visit the Alzheimer Association’s website at https://www.alz.org/. Also check out Freedom Mobility’s website for more information on products that can help keep your loved one safe https://freedommobilitysolutions.com/