Alzheimer's Disease Support Groups

What goes on, who attends, and why you might want to join one.
supportgroups

The basics of Alzheimer's support groups

Nearly every professional involved with Alzheimer's or other forms of dementia recommends support groups for caregivers and loved ones of people with the disease, simply because it can be so challenging -- emotionally, mentally, and physically. As the disease progresses and alters a person you know, you're bound to experience a range of reactions and face ever-changing problems.

Being with other people in similar situations can be a source of practical help as you learn about new ideas and resources. But most of all, it's helpful to talk to or listen to others wrestling with similar problems and the complicated feelings they bring.

What are support groups?

Support groups come in different shapes and sizes:

  • They may meet weekly, biweekly, monthly, or bimonthly.
  • Some have fixed start and end dates, just like a series of classes.
  • Others meet on a regular basis for anyone who drops in.
  • Most are free.
  • The individual meetings typically last about two hours each, and many are scheduled during evenings or weekends, to fit around working hours.
  • Groups vary in size, usually being open to between six and 20 people per session. Ideally, they're small enough for everyone to contribute and feel comfortable with one another.

Who attends?

It depends on the group. Some are specifically organized to help a particular subgroup of caregivers -- adult children, for example, or male caregivers. Some are set up for those whose family member is in a certain stage of the disease. Groups for early-stage Alzheimer's groups are increasingly available. Some gatherings have a faith-based or spiritual component.

SEE ALSO: Find Memory Care Near You

Typical Alzheimer's support group meetings

Who leads support groups?

It's helpful to know about the group leader's background. Groups are generally led by medical professionals, social workers, experienced caregivers, or volunteers who've been trained to lead support groups (and who usually have had firsthand experience with the disease). If the facilitator isn't a professional, ideally she should be sponsored, supported, or trained by a trustworthy organization such as the Alzheimer's Association or the Alzheimer's Disease Research Center.

Facilitators should be able to wear several hats: They may lead discussions by introducing specific topics, may balance group members' opinions and advice with other perspectives, may teach or share useful information, and may offer reassurance and encouragement.

What happens at meetings?

Groups vary in their purpose, organization, and "feel." Some support groups are formal, with guest lecturers scheduled to talk about common topics of interest to caregivers, like managing problematic behaviors or financial planning. Others are informal, inviting members to share stories about their experiences and give one another moral support. Many groups use a combination of these approaches, alternating candid conversations among members with lectures from special guests

What's the Benefit of an Alzheimer's Support Group?

Despite the differences among support groups, they have one thing in common: All have the potential to become an essential component of a caregiver's well-being and success. By blending psychological support and practical knowledge, an Alzheimer's support group is a resource that can't be replicated just by reading up on the disease or by leaning on friends or a partner for moral support.

Support groups offer caregivers and family members the opportunity to ask questions, share stories, give and receive comfort and advice, and learn more about Alzheimer's disease (including its different stages, care-giving strategies, relevant legal advice, housing and other care options, local care contacts and resources, and more).

SEE ALSO: Find Memory Care Near You

For many caregivers, a support group is a place to exhale. You may hesitate to confide certain information or experiences with family or friends who also know the person with Alzheimer's. You may fear that you'll be judged or criticized, or worry that what's said can affect family dynamics. It's often easier for any of us to talk with strangers who aren't involved in our particular situations.

And because the other group members have "been there," they may be more likely to listen compassionately to your expressions of guilt, frustration, or anxiety, or to stories about mistakes you feel you've made or challenging situations you've faced. A confidential, positive setting for sharing your experiences -- and releasing your emotions -- is known to be a tremendously important factor in how well one copes with caregiver stress.

Identifying the right Alzheimer's support group

Where can I find a group?

Groups are sponsored and organized by local Alzheimer's Association chapters, hospitals, churches, or other social-service or community organizations. Ask any of these institutions or the patient's doctor if they can suggest programs to investigate. These days they're easier to find than ever, as the disease affects ever-larger numbers and continues to lose its stigma and mystery.

Good sources of information on support groups, in addition to your local Alzheimer's Association chapter, include your local Area Agency on Aging, other social-service agencies, local hospitals, the patient's physician(s) and other health care professionals, a geriatric care consultant/coordinator/manager, adult day centers, and other caregivers. You can also participate in Caring.com's Online Alzheimer's Support Group right now.

SEE ALSO: Find Memory Care Near You

How do I find one right that's for me?

The trick to getting the most out of a support group is to find a good fit. Consider whether a group is convenient to your schedule and location, addresses your specific needs, and feels comfortable to you.

It's important that you feel at ease and can open up about your experiences and ask questions -- if not on your very first visit, then after you've sat in on a session or two. You may need to try out a few groups before settling on the right one. Don't be discouraged if one (or several) doesn't feel right to you -- investigate another.

Some people benefit from joining more than one group. In addition to an Alzheimer's support group, you may want to consider a group for caregivers of people with dementia of all forms, or a group for caregivers in general.

If your schedule is tight or you can't find an appropriate group locally, try looking online. Numerous online support groups are available through reputable websites and organizations. One example: Alzheimer's List, a group organized by the Alzheimer's Disease Research Center at Washington University in St. Louis.

SEE ALSO: Find Memory Care Near You


over 3 years ago, said...

are there any current threads on this site where caregivers offer support to each other?


over 4 years ago, said...

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over 4 years ago, said...

Christmas at my sisters house yesterday was very hard. Since we just lost our Mom in June it was difficult for everyone. Just was not the same. Mom was the Rock of our family. Now there is only one aunt left out of 7 children and her health is now good at all. She has now become our Rock. My hubby was very confused as to where he was and asked me sooooooo many times to go home. When we were getting ready to go he asked me if mama was going to be there so I just totally lost it. He loved her so much and she loved him and he just cannot remember that she is gone. The kids made it a special Christmas for him because as fast as the alz is progressing I do not think he will know some of us next year. I hate this disease. Merry Christmas to All


almost 5 years ago, said...

Hello ujh793, Our Steps & Stages program is a great online support group with Alzheimer's caregivers of all stages. If you haven't done so already, you may get started here: http://www.caring.com/steps-stages/alzheimers and learn all about our free, customizable Alzheimers resource. Don't heistate to contact me if you need any assistance. Kind regards, Sho from the Caring.com Community Team


almost 5 years ago, said...

I am looking for a good alz support group that I can relate to and share what is going on with my hubby as I am the sole caregiver for him. I have notice that there has not been much activity on this site for abt 3 to 4 months. Anyone still out there that would like to share with me.


about 5 years ago, said...

Very interesting and thanks for the information. I think this information is very useful. I want to share with you this information: http://dementiaand.com/alzheimers-usa-president-obama-supports-alzheimers PRESIDENT OBAMA SUPPORTS ALZHEIMERS On January 4, 2011 President Obama signed the National Alzheimer's Project Act (NAPA) into law. NAPA creates for the first time a coordinated national strategy to confront one of America's most feared and costly diseases, a disease that will only plague more baby boomers as focus government efforts and ensure that appropriate resources are maximized and leveraged to find better treatments, a means of prevention, and ample care and supportive services for the millions of families with the challenges of this disease every day.


about 5 years ago, said...

I retired and moved to Puerto Rico to take care of my mom, Dementia and Alzheimer, Very hard on me, Please any advise would be accepted, she is bed ridden all is done for her I have someone to help me give her a bath, in bed. she is 90 years old has this condition since May 2010. been in the hospital 4 times in the past year, with urine infection, suffered a trumbosis but eats well, soft things only. Its been very hard for me since I miss home, New York city. any suggestion would be helpful...God Bless Everyone...In Jesus Name Amen


about 5 years ago, said...

I need more information on support groups in Ponce, Puerto Rico


about 5 years ago, said...

My husband passed away a month ago. Honestly did not think it would be so soon, only diagnosed three years ago. Had a slight fall, hairline fracture of a rib, in hospital for three weeks. Just seemed to give up, no talking, eating or moving. Nursing home six days as we watched him go down more. Told him it was ok to let go, time for him to go home. Said I love you and he mouthed "love you" I pray that answers and a solution can be found for this desease that robs our loved ones of all they were.


about 5 years ago, said...

good


about 5 years ago, said...

Hello JMNB, Thank you very much for your comment. I'm so sorry to hear about the situation you've been having with your father lately. That sounds really difficult. Here are a few articles that you may find helpful: ( http://www.caring.com/blogs/caring-currents/alzheimers-anger ) and ( http://www.caring.com/articles/alzheimers-hostile-aggression ). If you still have additional questions, you can also post them in our Ask & Answer section: ( http://www.caring.com/ask ). Take care -- Emily | Community Manager


about 5 years ago, said...

My father has Alzheimer,s his short term memory gone and at time he gets comebative,we really don,t know what to do..we love him and it,s hard to even get him to bathe,he gets violet and theats everyone...we know he has guns in the house and we can not fine them because he moves them all the time.....he gets out in the cars and takes off we have no idea where he is....What can we do????? can you please help


over 5 years ago, said...

I'm so happy that my mom still goes to church. Because I have to work on Sundays, she goes with my dad and my husband. I don't know about tomorrow, I know about today, and today it was a good day for my mom, thanks God for that.


over 5 years ago, said...

Another source of support for Alzheimer's caregivers is Caring Steps & Stages, which includes online Stage Groups that connect caregivers whose loved ones are at similar stages of the disease. http://www.caring.com/steps-stages/alzheimers


over 5 years ago, said...

Hi juloh, Thank you for your comment. One great place you can start looking for support groups in your area is on the Alzheimer's Association website (http://www.alzmass.org/Support_Groups/New%20Hampshire/alzcaregiverNH.html). They also have an over the phone group if you need some support but can't leave home.


over 5 years ago, said...

How do I find the locations of these support groups, hopefully near as I do not like to leave him alone for any long period of time Live In Londonderry NH


about 6 years ago, said...

Treating Alzheimer's with an antidepressant can make the daily routine easier, with less distress for their caregivers. Constantine Lyketsos, MD, professor of psychiatry and behavioral sciences at Johns Hopkins University showed that Zoloft improves the quality of life for Alzheimer's patients with depression, reduces agitation, aggression and anxiety, and slows the functional decline. Zoloft did not improve impaired mental abilities such as thinking, remembering, and learning. As depression predisposes to Alzheimer's disease, it is reasonable to suspect that antidepressants are capable of preventing or arresting the disorder. Refusing to widely disseminate this information would be an egregious ethical violation.


about 6 years ago, said...

I am a caregiver for my mother in law... She sold her home to live with us. At that time she was just forgetting things....simple things..She was not diagnosed with AD til about 3 months after she moved in with us...that was about 5 years ago...we Are now finding out how difficult it is to care for her... I would love and appreciate talking (emailing) anyone going thru the same as us....we need help dealing with the stress this has brought on to us../


about 6 years ago, said...

then lets email and talk when it becomes to much daily what ever. my problem is my sister lives down the street and hasn,t called me about mom in a long time. no help nothing