Information and resources that support your role in caring for a loved one.

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 discuss the importance of keeping a loved one who has Alzheimer’s or another form of dementia engaged in activities and some of the ways to do that. Providing insight is Juanita Allen Kingsley, Wilderness EMT, who is the Director of Business Development for Century Health Systems. 

A health educator, she trains more than 2,000 people in the MetroWest region annually through her First Aid, Wilderness First Aid, CPR and AED classes in addition to the variety of health and safety programs she teaches. She holds a Bachelor of Science degree in Business Administration from Boston University and completed EMT training at Northeastern University. She received her Wilderness EMT training certification through Mountain Aid Training International.

For more information, visit www.centuryhealth.org or call 508-651-1786.

Caregiving MetroWest: Why is it important to keep someone with Alzheimer’s or another form of dementia engaged in activities as much as possible?
Juanita Allen Kingsley:
 Keeping family members with Alzheimer’s engaged in activities is important because stimulation can slow down the progression of the disease. It can also provide a structure and routine to the day that will help patients sleep better. Activities that provide movement can help physical health as well.

CGMW: In order to engage in any activity, a caregiver needs to communicate the directions for that activity, but dementia affects communication. What are some of the issues that Alzheimer’s and other forms of dementia create when it comes to communication? How do those communication issues change or progress over the course of the disease?
Allen Kingsley:
 Many people with dementia also have hearing issues, so it’s important to speak loudly enough, make eye contact, and also use hand gestures. Remember that your loved one will get confused if you give two or three instructions at a time. Wait until they have completed one instruction before you speak with them about another. As the disease progresses, these concepts become ever more important to remember.

CGMW: What are some strategies for communicating with someone with Alzheimer’s?
Allen Kingsley:
 As the disease evolves, our way of communicating needs to evolve as well.  Here are a few suggestions:
• Speak directly to the person you’re caring for if you want to know how he or she is doing and take the time to listen to the answer – how someone is feeling or what they need. It’s hard not to become impatient sometimes, but don’t interrupt or finish sentences for someone, unless they ask for help in finding a word. Maintain eye contact. When conversing with others present, please don’t ignore the person with Alzheimer’s – look at them as well.
• Avoid criticizing or correcting. Don’t argue. If the person says something you don’t agree with, let it be.
• As the disease progresses, nonverbal communication becomes more important.
• The emotions that are being expressed are more important than being said. Try to identify the feelings behind the words.

CGMW: One of the central issues for someone with dementia is the confusion the condition creates and the fear that causes, combined with a decreasing ability to stay focused and fend off that confusion. How can a caregiver help someone with dementia stave off that confusion and fear and become more focused or engaged in an activity?
Allen Kingsley:
 It’s important to have activities evolve as the disease progresses. Try to shorten the activities. Working on a puzzle may only be of interest for 15 minutes, rather than 30. Make sure to limit background noise and distractions. Include a loved snack into an activity. And don’t take the lack of focus as a reflection on your relationship. It’s the disease, not the person.

CGMW: Are there some particular activities or types of activities that you would suggest for caregivers to try?
Allen Kingsley: 
The more we know about a person’s background, the better we are at finding activities that will captivate a loved one. My mother was an avid gardener, but had long been unable to garden outside.  We set up a craft table on the porch, I put a bag of potting soil in a dishwashing bin and put flats of pansies and pots of different sizes on the table. With her wheelchair at the table, she was able to fill the pots with potting soil. I would give her a pansy to plant in the soil and then she watered it with water we’d put into a small water bottle. This was a huge hit! The smell of the soil, the feel of the plants, the colors of the flowers – it was such a multi-sensory treat!

CGMW: Many people with dementia respond well to activities involving music? What is it about music that resonates with people with dementia and what are some ways to incorporate music into activities to engage your loved one?
Allen Kingsley:
 Our son loaded two Ipods with music from the 1930s and 1940s when my in-laws (98 and 96) were teenagers and young adults. We got some headphones and had them listen to the music. It was absolutely enchanting to watch my in-laws listen to music that evoked memories from very long ago. All of a sudden, my father-in-law started crying. We asked him why he was crying and he said that this was the song that was played at a childhood friend’s funeral. He talked for quite a long time about this dear friend and how important their friendship had been.

Musical memories are often preserved in Alzheimer’s disease because key brain areas linked to musical memory are relatively undamaged by the disease. This summer when my in-laws were in a skilled nursing facility together, our younger daughter bought an inexpensive turntable and brought a big stack of dusty LPs to her grandparents. She set up the turntable and started to play some of the records. It was a multi-sensory activity: the covers of the records, the smell of their home which was still in the stack of records, seeing a turntable move, and of course the music itself. They loved it!

CGMW: Setting up the environment for any activity is important. How can the surroundings affect a person with dementia’s ability to engage in an activity and how important is it to limit distractions as much as possible?
Allen Kingsley:
 All of us have difficulty with being distracted and Alzheimer’s amplifies this. Background noise and movements can compromise the pleasure of an activity for both caregiver and family member.

CGMW: How simple or complex should activities be for someone with dementia? And how does that change as the disease progresses?
Allen Kingsley:
 Every person living with Alzheimer’s is different and everyone’s disease progresses differently. Be prepared to shorten or simplify activities. And remember, we all have good and bad days. Just because an activity wasn’t a hit one day doesn’t mean we should try it again on another day.

CGMW: Is there anything else about helping a loved one with Alzheimer’s or another form of dementia be engaged in activities that a caregiver should know?
Allen Kingsley: 
One of the keys is that the activity should be meaningful for the person. Often, meaning is tied to past occupation or hobbies, so what’s meaningful for one person might not be so for another. My mother was a fantastic cook and an avid collector of recipes. I still have her painted recipe box, filled with handwritten recipe cards in her handwriting and others. Some of these cards were from the 1950s. Sharing recipes was a favorite activity. Going through this recipe box was a delight for us both. She would talk about whether the recipe was a hit or not, the person who had shared it with her (“You know, Jean always wore her skirts too short. It really wasn’t attractive. …”) and what she would serve it with. Her recipe box was in many ways the story of her life. She also loved her silver to shine, so we polished every single candlestick and candy dish many many times!

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