August 2012 Newsletter

After support group ends, attendees form their own group

For caregivers and their loved ones with Alzheimer’s disease, support groups provide much needed information, a place to air their burdens, and companionship with people in a similar situation.  After their eight-month class on memory loss, five couples and two single women did not want their camaraderie to end, reporter Dominique Fong wrote for The Oregonian.  One couple, Dave and Hallie Caswell, said their love and care for their fellow attendees grew so much that they invited them to the Caswell home in Beaverton, Ore., for a potluck dinner.  At first, they dubbed their group, “I Forget,” but after some group members began to forget the name, they changed it to the “Wild Bunch.”  Fong wrote that these types of groups are crucial to overcoming the stigma and loneliness of Alzheimer’s disease.  There is a need for caregivers and people with the disease to have a place to go to socialize, to learn, to interact, to prevent some of that isolation and minimize some of that stress often for people with this disease, said Kristrun Grondal, the Oregon program director for the Alzheimer’s Association.  For the Wild Bunch, not only did its members maintain their friendship, they also continued their forum of discussing their daily frustrations as the disease progressed.  In addition, if any member needs assistance, the Wild Bunch has an unwritten pact that says help is just a phone call away, Fong wrote.  Besides the Wild Bunch’s homegrown group, the Beaverton area is host to an Alzheimer’s Café, which offers a social outlet to attendees along with a short presentation by an expert on a range of topics, including assisted living or elder care issues.  One member of the Wild Bunch summed up its attendance at their Alzheimer’s support group very nicely.  Alzheimer’s can bring you together quite easily, said 72-year-old Meme Amaral, who has Alzheimer’s disease.

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Tips for good communication with loved ones with Alzheimer’s

For those who have just taken on the role of caregiver to those who are old hands, Carole Larkin has revised her tips for communicating with patients with Alzheimer’s disease or other forms of dementia.  Larkin, a geriatric care manager who specializes in helping families with Alzheimer’s and dementia related issues, offers an insightful list that will help caregivers and family members communicate with their loved ones in a variety of ways.  To summarize her tips, she says you should always approach your loved one from the front.  If you advance toward them from behind or the side it will probably startle them.  You should also make eye contact and try to place yourself at their level.  If they are sitting, you should sit as well.  When speaking to your love one, you should speak slowly and calmly in short sentences.  Also, only ask one question at a time and wait for them to answer before you ask another question.  Moreover, you should never ask them questions of “why,” because that is too complicated for them, Larkin wrote for the Alzheimer’s Reading Room.  Another important tip is to monitor your loved one’s senses to check for changes.  If any changes occurred, you will need to adapt your communication techniques to allow for those changes.  If there is a change in hearing, you should check to see if they understand what you are saying, Larkin advises.  In addition, the author reiterates the importance of allowing a person with Alzheimer’s to do as much as they can for themselves.  For this tip, you need to make sure your loved one is safe and supervise them as they work through the task.  Have them perform the task in stages, where they do one simple part, and then move to the next segment.  You should also praise your loved one whenever they accomplish any task.  Caregivers should always emphasize the “we” of daily living.  Constantly tell them that you are there, that they are not alone, and that everything is OK, Larkin wrote.  You can also raise their self-esteem by telling them that you care about them.  Use a positive, upbeat style to communicate with your loved one, as people with dementia tend to reflect the emotion a person displays to them.  As a final tip, Larkin writes that caregivers may have to use body language to communicate as the loved one progresses through the stages of Alzheimer’s disease and words and their meaning no longer make sense.

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Walk to End Alzheimer’s may raise more funds with teams of walkers

As only a relative few people work as scientists, the majority of people might want to pursue other means to aid in the fight against Alzheimer’s disease.  While the temperature is still warm in the majority of the U.S., a group in North Platte, Neb., is laying plans for an annual fall event, the Alzheimer’s Association Walk to End Alzheimer’s.  A slight change to this year’s walk has the organizers urging walkers to participate in teams, wrote Diane Wetzel, a reporter for the North Platte Telegraph.  The North Platte committee organizers held a team captain meeting for people interested in learning about the walk.  At the meeting, the organizers distributed fundraising packets and information on raising awareness and money, Wetzel wrote.  The meeting also served as a way to get people motivated, find team members, and raise funds.  The change from individual walkers to a team-oriented approach may lead to increases in the amount of money raised and the fun level for the participants, said committee member Kirsten Parker.  It has been proven that there is an increase in funding and awareness with teams, she said.  Billed as the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research, the Walk to End Alzheimer’s serves as a means to allow everyone to do their part in the battle against the disease.  It also allows the walkers to help their own neighbors and honor their loved ones.  The event is held annually in more than 600 communities nationwide, according to the association’s Web site.

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Guidelines to use when being falsely accused by your loved one

Some behaviors expressed by patients with Alzheimer’s disease, or other forms of dementia, may throw their caregivers for a loop.  Suzanne Holguin, who writes the “Caregiving” column for the Petoskey News-Review, writes about one of the more surprising ones, caregivers who are falsely accused by their patients.  Holguin writes that even though caregivers know patients with dementia transition from moments of coherency to states that show cognitive decline, a caregiver’s first reaction is to defend themselves against the accusations.  Holguin, a registered nurse who holds a Bachelor of Science in Nursing, is an assessment nurse and caregiver support group facilitator at the Friendship Centers of Emmet County, Mich.  She shares some tips to help caregivers navigate this situation when it occurs.  Holguin says you should try to use basic language to affirm that you understood what your loved one told you.  A caregiver should say, I am glad you told or shared that with me, I did not know that, Holguin wrote.  Next, the caregiver, or family member, should assure and confirm with the loved one that you will tell someone or take care of it.  In addition, you should also say, I will make sure that will not happen again, she wrote.  After being accused, one of the main elements you should address is making sure your loved one is not afraid and feels safe, Holguin wrote.

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Ways to ensure we meet the social needs of patients with dementia

Last month, Angela Lunde began a series on negative behaviors.  Lunde wrote that a patient who acts out, or exhibits disruptive behavior, is communicating to you that they have an unmet need.  In the third part of her series, she reminds us that unmet needs generally fall into three broad categories: personal health, physical environment, and social environment.  In this part, Lunde, the chief writer for the Mayo Clinic’s Alzheimer’s blog and a dementia education specialist in the education core of Mayo Clinic’s Alzheimer’s Disease Research Center at the Abigail Van Buren Alzheimer’s Disease Research Clinic, addresses the patient’s unmet social needs.  The social environment, including relationships with others, shows just how deeply the losses a person with dementia suffers and how those losses affect their quality of life.  The caregiver is the one who can help the patient maintain the social part of their lives.  Lunde says these unmet social needs are what everyone craves and requires for basic human fulfillment.  The writer provides a list of these needs and offer details for each requirement.  Some of the items on the list include: meaningful activity and a sense of purpose, a sense of autonomy, a sense of identity, and understanding and being understood.  After the list, Lunde provides some techniques to help caregivers and families communicate with their patient with dementia.  Caregivers should don a positive disposition, use “little lies” to reduce stress for their loved ones, recognize that being rational and logical with someone who is not can only get you in trouble, and listen with your ears, eyes, and heart.  Overall, Lunde hopes that more people are now seeing disruptive behavior as the only way a patient with dementia can communicate that they have an unmet need.

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Patient wanders off while waiting for ride after medical appointment

Reporter Nick Budnick addresses a tough question: Should patients with dementia ever be left unattended while out in the community.  Budnick, writing for The Oregonian, relates a recent event where an 82-year-old patient wandered off after a medical appointment.  The medical staff concluded the appointment for the patient, James Frederick Martin.  After talking about “going home” to an apartment he had not lived in for years, Martin left the medical facility, Budnick wrote.  Martin should have waited for a ride back to his residence from his medical transport, but before it arrived, he slipped away.  The incident resulted in a 21-hour search with K-9 teams and police alerts.  Fortunately, police found Martin alive and unharmed.  The obvious question to ask is, “Where was Martin’s caregiver?”  During his investigation, Budnick tried to get all the facts, but the police, the medical transport company, and the owners of the medical clinic cited privacy concerns and declined to answer some questions.  The lack of answers only leaves us wondering who is responsible for the incident.  Even if he has been safe before, Martin’s caregiver should not leave him alone at any point, said Kristrun Grondal, the Oregon program director for the Alzheimer’s Association.  Grondal said that even though the situation may seem safe, you never know when that moment comes when the patient is motivated to take off.  While the safety of the patient with dementia should be a top concern, if your loved one does wander off, Budnick suggested a few additional measures that offer some extra protection.  Some resources to consider include “safe return” bracelets and the emergency response system to help locate wandering patients.  In addition, an agency in Martin’s Northeast Portland vicinity offers volunteer escorts for patients, if for some reason, the caregiver cannot attend his loved one.  Budnick notes a rule of thumb supplied by some experts: If people cannot be trusted to drive, then they probably should not be trusted to use transit unsupervised.  The executive of the agency that provides escorts disagrees with that concept, which brings us back to the original question of responsibility for unattended patients with dementia and their ultimate safety.

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