Dementia is a devastating disease with huge impacts for family, friends, and communities. Whether diagnosed in the mid-stages of the disease or as early-onset Alzheimer’s, many individuals fear the isolation of potentially losing their friends, jobs, and connection to the life they once knew. For the friends of those who have been diagnosed there is a lot of fear too. Will their friendship become a one-way relationship? How do you now treat this person who you care about deeply? Here are a few tips for how to maintain friendships and support people you care about through their diagnosis and journey with dementia.
Pay Compassionate Attention
Dementia can really take people by surprise as symptoms may develop slowly over time and even come and go inconsistently. As you spend time with your friend, it is important to watch for changes in behavior. Alerting them and their family to these changes can help maintain safety and proactively address care needs before they become a bigger problem later.
Especially for those with early-onset Alzheimer’s it can be devastating to have individuals talk around or over you. Even as a friend’s ability to communicate may diminish over time, it is crucial to engage them directly and acknowledge that they are the same person behind the disease. Here are a few tips to help with communication as the disease progresses:
- Make eye contact and call the person by name.
- Keep talk on adult-to-adult level, but you may need to speak a little slower.
- Make use of body language and gestures as you communicate.
- Give plenty of time and space for responses and encourage all attempts at communication.
- A simple written note can help to calm a person who is trying to remember a specific piece of information.
- Reduce background noise. You may be able to hear over the radio, but they might not.
- Validate. Validate. Validate. Focus on abilities instead of disabilities.
- Don’t correct or argue with misinformation about the past. Step into their reality and listen to what they are feeling and thinking.
Helping a friend re-enter their own community after a diagnosis is a really important way to show your support. Ask if they want help telling others and what their wishes are. By being a gatekeeper in your community, you can help other friends and those you share a community with understand the changes and needs of your shared friend and to engage with and support them. Always respect the wishes of friends and family when it comes to keeping a diagnosis private.
Dementia is a fatal disease, but family and friends often describe losing a loved one twice: once during their decline and again after they pass away. As a close friend it is important that you take time to grieve for your own loss. Joining a support group may be an important part of your grieving process as well as getting involved with an organization like the Alzheimer’s Association.
Remember & Preserve
While a long-time friend may begin to lose past memories over time it is really valuable to walk friends down memory lane. Capturing old stories or putting together a photo album can really be a gift to your friend and their family.
The Gift of Music
Maybe you shared a love of a particular type of music with your friend. Maybe you remember what they danced to at their wedding or what tunes were on the radio when they were courting. Making a CD or playlist for your friend can help them connect to their memories and who they were. Music can offer a backdoor to the mind and often be a tool for connecting with friends, family, and caregivers. This type of gift can even been shared whether you can still visit the person or not.
Breaking the Stigma
Knowing about the disease is crucial to breaking the stigma around the many types of dementia. For example, Alzheimer’s can be talked about as “old-timer’s”. The stereotype is that the disease is fundamentally about memory problems and what is more, that it is a normal part of aging. This couldn’t be further from the truth. Dementia is an umbrella term for several types of brain disease. It is the 6th leading cause of death in the United States and the only one that cannot be prevented or cured. While it is pervasive with 5 million Americans already living with the disease and someone developing it every 67 seconds, it is not a normal part of aging.
Here are 5 Tips from the Alzheimer’s Association to Overcome the Stigma
1. Be open and direct: Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure.
2. Communicate the Facts: Sharing accurate information is key to dispelling misconceptions about the disease. Whether a pamphlet or link to online content, offer information to help people better understand Alzheimer’s disease.
3. Seek Support and Stay Connected: It is important to stay engaged in meaningful relationships and activities. Whether family, friends, or a support group, a network is crucial.
4. Don’t Be Discouraged: Denial of the disease by others is not a reflection of you. If people think that Alzheimer’s disease is normal aging, see it as an education opportunity.
5. Be a Part of the Solution: As an individual living with the disease, yours is the most powerful voice to help raise awareness, end stigma and advocate for more Alzheimer’s support and research.
For the friends of those living with the disease it is equally important to be an advocate for those who can no longer speak for themselves and be a voice that fights for a cure.
Work for a Cure
The Alzheimer’s Association is a wonderful resource for getting involved with this worthy cause. You can find ways to join an Alzheimer’s Walk for the Cure, volunteer, give to research, connect with support groups, promote awareness and raise your political voice. Visit www.alz.org to learn and get connected.
Published on June 19, 2014.