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News and analysis on caregiving topics in MetroWest and beyond.

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Caregiving Chronicles will present news and analysis on caregiving topics in MetroWest and around the world, in-depth Q&As with experts in fields related to caregiving and updates and announcements about caregiving resources available in MetroWest from CaregivingMetroWest.org Program Director Douglas Flynn.


Caregiving Chronicles Q&A: Caring for someone with Alzheimer's disease
By Douglas Flynn / November 5, 2015

Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org.

Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts. In this entry, we cover some of the issues facing caregivers caring for loved ones with Alzheimer's or another form of dementia. Providing insight is Judith Boyko, MBA, MS, RN, who has served as the CEO of Century Health Systems since it was established in 2001.

Boyko holds a Bachelor of Science degree in Nursing from the University of Pittsburgh, a Master of Science in Public Health from the University of Massachusetts, Amherst and a Master of Business Administration from Clark University. She has been recognized by the Home & Health Care Association of Massachusetts as Manager of the Year in 1997 and received the Deborah Blumer Community Health Leader Award from the MetroWest Community Health Care Foundation in 2007. She can be reached at info@natickvna.org or 508-651-1786.

Caregiving MetroWest: How do you recognize the signs of Alzheimer’s or another form of dementia? What should you do if you see those signs in your loved one?

Boyko: First, you’ll need to determine if your loved one’s loss of memory is just part of the aging process or if it’s a more serious condition like Alzheimer’s or dementia. The former can present itself in ways like not being able to find one’s car keys. But when an individual can’t seem to remember how to operate a car or get to and from the supermarket, then it’s time to consider that she may be suffering from a more serious condition. Another example of age-related memory loss is forgetting about an appointment. But forgetting to eat or bathe can be a sign of a larger memory issue.

When you see signs of a decline in your loved one’s memory, talk to her doctor. Let the doctor know about your concerns, cite specific examples, and the doctor may recommend strategies to manage symptoms. Some strategies may include use of a specific medication; spending more time with family; or a change in environment.

The 10 Early Signs and Symptoms of Alzheimer’s is a great resource provided by the Alzheimer’s Association.

CGMW: How do the effects of Alzheimer’s change and how does caring for someone with Alzheimer’s change as the disease progresses?
Boyko:
As Alzheimer’s begins to develop, a protein called beta-amyloid forms in clusters on the brain, leading to nerve damage, causing the brain to shrink. Eventually, normal brain functioning ceases.

Caregivers of all kinds must learn to adapt to changing situations with their loved ones who suffer from Alzheimer’s. One day, a loved one might simply need to listen to familiar music to lift a mood. Other days, as the disease progresses, caregivers may need to make lists for their loved one that can be used as daily reminders to take a certain medication, for example. Those with Alzheimer’s may also benefit from written instructions for utilizing certain items in the home or notes about safety, like “Remember to turn the oven off” or “Be sure to lock the front door when you come in from outside.”

CGMW: Are there any tips or strategies for better communicating with a loved one with Alzheimer’s?
Boyko:
It’s important to note that the cognitive decline in someone suffering from Alzheimer’s is gradual, so communication will change over time. Some helpful tips, though, include the following:
- Be patient. It may take your loved one time to process what you are saying.
- Introduce yourself each time you’re with your loved one. He may not remember who you are, even if you are with him every day. The Alzheimer’s Association says, “Approach the person from the front and say who you are. Keep good eye contact; if the person is seated or reclined, go down to that level.”
- Speak in short sentences, and ask one question at a time to avoid confusion or frustration.
- Keep it simple. It’s easy to get distracted or overwhelmed when suffering from Alzheimer’s.

CGMW: How should a caregiver handle aggressive behavior, either verbal or physical, from a loved one with Alzheimer’s?
Boyko:
The Alzheimer’s Association gives a number of reasons that someone with Alzheimer’s may become aggressive: physical discomfort, environmental factors and poor communication.
- “The main cause of behavioral symptoms associated with dementia is the progressive deterioration of brain cells, but other factors — such as pain — also can cause symptoms or make symptoms worse,” according to the Alzheimer’s Association. Find out if they may be experiencing side effects from a medication. Remember: someone with Alzheimer’s struggles to find the right words to communicate, so as a caregiver, you may have to dig a little to determine what the issue is.
- Environmental factors like being too warm or too cool may contribute to aggression, as does the time of day. Maybe your loved one isn’t a morning person, or maybe she seems more alert mid-day. If your loved one is at a family gathering but feels lost in a big crowd, consider celebrating in a more remote part of the home.
- Communication in those with Alzheimer’s decreases with the advancement of the disease. When addressing someone with Alzheimer’s it’s important to be very clear in what you’re saying, and enunciate your words. The Mayo Clinic says that an individual with Alzheimer’s may “lose his or her train of thought; struggle to organize words logically; need more time to understand what you’re saying; and curse or use offensive language.” So, be sure to manage any aggravation you may feel, and just keep your conversation simple.

CGMW: How about handling anxiety or agitation, which often occur for people with dementia?

Boyko: Because someone who suffers from Alzheimer’s may develop a fear of the unknown or feel threatened, she can also become agitated. Losing one’s memory and basic language skills can certainly cause anxiety. Some options to help reduce anxiety or agitation include medication; creating a soothing environment with minimal noise for your loved one; listening to what your loved one is saying and responding appropriately; and even developing activities like reading time or an art project to help your loved one focus.

The Alzheimer’s Association recommends the following techniques: “Back off and ask permission; use calm, positive statements; reassure; slow down; add light; offer guided choices between two options; focus on pleasant events; offer simple exercise options, try to limit stimulation.”

CGMW: What should you do if a loved one becomes confused, does not recognize you or their surroundings?
Boyko:
Call your loved one’s physician to arrange for an examination and a cognitive evaluation, if necessary.

CGMW: How should you deal with a loved one who wanders or becomes lost?

Boyko: Dealing with wandering can be scary for a caregiver. “People with dementia walk, seemingly aimlessly, for a variety of reasons, such as boredom, medication side effects or to look for ‘something’ or someone. They also may be trying to fulfill a physical need—thirst, hunger, a need to use the toilet or exercise. Discovering the triggers for wandering is not always easy; but triggers can provide insights to dealing with the behavior,” according to the Family Caregiver Alliance.

Shana Hermans, Century Health Systems’ Population Health Specialist, has received Habilitation Therapy training in Alzheimer’s disease from the Alzheimer’s Association and has trained our clinicians to further their knowledge base in caring for our patients who suffer from Alzheimer’s disease. Shana says that the following can help reduce the instances of wandering:

- Caregivers should develop daily routines/plans to try to identify the most likely time their loved one may wander;
- Reassure the person wandering if he/she feels abandoned or disoriented that she is not alone;
- Ensure all basic needs are met;
- Avoid busy places that can be distracting;
- Place locks and keys out of sight and consider changing the doorknob colors to camouflage them;
- If wandering is a problem at night, limit fluid intake to no less than two hours before bed, encourage them to use the bathroom before bed and keep hallways lit with night lights;
- Make sure your loved one always has identification on them that includes their name, address and a phone number;
- Introduce neighbors to your loved one; and
- Increase your loved one’s physical activity. The National Institute on Aging has a tip sheet to help those with Alzheimer’s stay active.

Finally, Shana urges that caregivers try not to leave a loved one with Alzheimer’s disease alone.

CGMW: Are there home safety tips that are unique or particularly important for someone caring for a loved one with Alzheimer’s?

Boyko: Be sure that your loved one’s home is safe by installing locks and/or alarms. “You might place pressure-sensitive alarm mats at the door or at your loved one's bedside, put warning bells on doors and use childproof covers on doorknobs. If your loved one tends to unlock doors, you might install sliding bolt locks out of your loved one's line of sight,” says the Mayo Clinic. Also consider a PERS (Personal Emergency Response System) unit that contains a GPS tracker. 

Other home safety tips for those with Alzheimer’s – as well as those without – include:

- Pick up throw rugs that pose a trip hazard.
- Minimize clutter.
- Be sure any wires and electrical cords are organized neatly, away from areas with heavy foot traffic.
- Put medications away until you or another caregiver is able to administer them.
- Install ample lighting to reduce the risk of a fall or other accident.

CGMW: What are some ways to cope with the stress of caring for someone with Alzheimer’s?
Boyko:
The National Institute on Aging has a wealth of useful information on its website. In particular, the “Caring for a Person with Alzheimer’s Disease” report has great tools that provide insight on how to take care of yourself as a caregiver; how to get caregiving help; how to manage your own emotional health; and more.

CGMW: How else should caregivers make sure to take care of themselves? Are there any additional resources caregivers of loved ones with dementia should be aware of?
Boyko:
The Alzheimer’s Disease Education and Referral Center on the National Institute of Aging’s website offers myriad resources for Alzheimer’s caregivers. Some of those topics include behaviors, safety, communication, every day care and more.


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