Dementia Caregivers Connecting in the Community for Self-Care

Dementia affects everyone!

5 million people are currently diagnosed with Alzheimer’s disease in the US and another person is diagnosed every 67 seconds.

1 in 9 adults over 65 has Alzheimer’s disease.

Memory loss is difficult, and not just on the person who is diagnosed and trying to make sense of a world that is changing.

It is also hard on the family caregivers who are helping their loved ones navigate that world.

When a family caregiver begins the journey of dementia, friends often go by the wayside, as do many activities, when the caregiver puts the needs of their loved one above their own.

Taking a Toll on Family Caregivers

As dementia progresses, it may be all a caregiver can manage to get their loved one to his doctor appointments and back home safely.

Caring for a person with dementia takes a toll on caregivers. Unfortunately, the person whose needs are often neglected is the caregiver.

What types of services and programs are available to help family caregivers make this journey less difficult and more rewarding for everyone?

Most caregivers are familiar with support groups but what other options are there to help caregivers?

Where do you find community based resources with which caregivers can connect to help them improve self-care through knowledge, improved skills and handling situations that affect their loved ones?

Dementia Coping Classes

Have you ever considered attending a class or series of classes that can help you cope with dementia?

There are many great offerings around the country that provide caregivers with information, self-care strategies and coping skills for those in the various stages of dementia.

Dementia Dialogues is one such series of classes that helps caregivers. This particular series is offered at no cost to the participant and is funded via grants.

Some of the topics include:

  • Introduction to Dementia
  • Communication skills
  • Safety, activities of daily living, quality of life
  • Challenging behaviors
  • Problem solving

Many family caregivers decide to take these classes to better understand what their senior loved ones are experiencing, become better prepared for the future to handle dementia progression and to learn skills to handle the disease.

Many communities across the country have workshops and classes available for dementia caregivers, typically provided by the local Alzheimer’s Association, Area Agency on Aging program, church outreach or home care company.

Online Resource Options

Dementia training programs can be done in person or online. One source for online training courses that can easily be accessed is the Alzheimer’s Association.

One online program for family caregivers is called CARES Dementia Care for Families. This program is specially designed for families with practical tips on caregiving. There is a fee for this class.

EssentiALZ is another online program for caregivers who wish to learn quality caregiving techniques offered through the Alzheimer’s Association. This course does have a fee.

The Alzheimer’s Association also offers free e-learning workshops that can be done on your schedule. There are a variety of topics that family caregivers would find helpful.

In addition to in-person classes, online classes or e-learning modules, there are DVDs and books that caregivers might find useful and help them handle challenges that arise.

Learning more about dementia caregiving is one way family caregivers can take care of themselves. You can reduce your stress and the effect on your own physical health when you learn dementia specific care strategies from one of the many options available.

Memory Cafés

There are some truly innovative places that welcome family caregivers and people with dementia popping up across the country.

Getting out with other people, socializing and not becoming isolated are things that caregivers of people with dementia need to have a strategy to prevent. Losing the ability to socialize can be detrimental to both caregivers and care recipients.

A dementia, or memory, café is a gathering place for individuals with memory loss. It is a supportive and engaging environment for them, peers and family or friends. It is a place that many go to escape from the disease of dementia for a little while.

There is no fear of ‘misbehaving’ or saying something wrong. Others like you are accepting and supportive. It is a social situation for enjoyment and friendship.

It can be held in a café, museum, library, community center or restaurant. Anywhere where people can come together in comfort.

Memory cafes have been around in other parts of the world since 1997 but have begun gaining popularity in the US where there are an estimated 200 cafes operational.

Interactive and Participatory

Be aware that they are not support groups, lecture classes, respite programs, daycare, happy hours or a way to promote a business. They are supposed to be interactive and participatory for enjoyment!

Here is a locator for a café near you.

If you don’t have one near you, consider getting together with others and create your own! Where there is a need, there will be people willing to join!

You need a location that is comfortable with adequate parking preferably a fun place. Next, spread the word when you plan to get together.

Finally, enjoy the meeting and the fellowship. It will build from the first meeting.

Once established, add your meeting to the national registry so others can find you too!

Day Out Programs

Our local community, and probably yours, includes many people with dementia who are being cared for in the home by family caregivers.

We know this from the numbers that attend two local support groups in the area.

Family caregivers have expressed their desire and their unmet need to have a place that will be stimulating and safe for their senior loved ones to go so that they can do essential activities like go to the doctor themselves, run errands, take a nap or get a chore completed without distraction.

They are in need of a place to go that fits both their needs such as a day out program.

Caregivers Finding Time for Themselves

Family caregivers biggest hurdle can be finding time for themselves!

Finding a program that provides brain stimulation, peer support, socialization and physical activity for their senior loved one is very important for caregivers.

There are adult day care center programs that you might be able to access. Many have health related programs that can accommodate persons with dementia. These programs offer activities, a nutritious meal, and socialization opportunities for your senior loved one.

The centers are safe and the day is structured. Many of the participants have some form of cognitive impairment.

There may be a different center program for people who are more mobile and may be free from other chronic conditions, such as dementia. The name may indicate this difference, for example, senior center versus day care program designed for those with limitations. Be sure to ask the program director if there are restrictions for attendance.

Dementia Specific Programs

There are dementia specific programs that offer services with dementia as the focus. These programs are geared towards people with dementia, activities that meet their needs and which provide even more support for caregivers.

You might want to review this step-by-step guide to choosing day care with tips to get started and a locator.

There may also be day out programs offered in your community by different organizations, including church outreach organizations or senior ministries. These are usually held for a few hours one morning a week and mimic programs offered at the ‘senior center.’ There may be a faith based activity accompanying the program, such as prayer time or devotion. These programs are usually low or no cost to the participant, held in convenient locations or include friends that you trust. Check them out and see if they would work for you and your senior.

Encouraging and facilitating your senior loved one’s attendance in a day program for some period of time during the week will give you, the family caregiver, some much needed respite time.

You both benefit!

Community Involvement Benefits

Family caregivers who already feel pressure to complete everyday tasks just to keep the household running may feel that seeking out and attending community events and programs is one more task too many.

However, there are physical and mental well-being benefits for caregivers who are able to capitalize on community sponsored training and respite programs.

Contact the facilitator of the local support group. This person will know what programs and events are available in the community and can connect you with learning opportunities, sitter recommendations, grant applications, vouchers for respite and more useful information that can help you.

Socialization opportunities, friends, as well as brain stimulating and meaningful activities will all help your senior with dementia have a better quality of life.

It will help you cope as a caregiver while preventing burnout so you can go on being the best caregiver possible!