Insightsthe blog of Porter Hills
Dementia and the Caregiver
Recently I taught a class for a group of caregivers in the community. To prepare I spent some time doing research. I have worked in the caregiving field for 13 years and I am still learning things! Our understanding of dementia and caring for people affected by dementia continues to evolve.
We also have the Alzheimer’s Association Walk to End Alzheimer’s coming up. I am inspired daily by my fellow caregivers as we each develop unique strategies to provide caregiver for a person with dementia. I am proud to work for an organization that supports locally and is dedicated helping the Alzheimer’s Association achieving the mission of ending Alzheimer’s. Since there is still so much we don’t know though, I am going to focus on what we do know.
Briefly, I would like to give some perspective on the issue before we delve into caring for people living with dementia. The World Health Organization defines Dementia as a syndrome, usually of a chronic or progressive nature, caused by a variety of brain illnesses that affect memory, thinking, behavior and ability to perform everyday activities. Dementia is NOT a normal part of aging and most forms of dementia CANNOT be corrected. Many people tend to lump all forms of dementia into the category of Alzheimer’s and really there are many types of dementia and they all have different effects on the mind. The World Health Organization estimates the number of people living with dementia worldwide is currently at 35.6 million. This number will double by 2030 and more than triple by 2050. If you would like more information on the different types of dementia you can use the resources noted below.
Most of us are familiar with the symptoms of dementia at this point since it has gained more of a spotlight recently. For now I would like focus on making the caregivers life a little easier. In order to do that we need to be creative. Since the person we are caring for cannot always articulate their needs, wants or frustrations, we need to interpret for them and respond accordingly. Below are somethings to consider when trying to problem solve a challenging situation or behavior. Also, there are some tips to help both the caregiver and person with dementia have a better relationship.
Triggers for challenging behaviors or situations
- Physical pain
- Is there an injury?
- Is the person hungry or thirsty?
- Do they have a cold?
- Are they sleeping enough?
- Is it too hot or cold?
- Is it too loud?
- Are they involved in an overwhelming task?
- Do they no longer recognize caregivers or family?
- Are they looking for someone or something?
- Is the relationship between patient and caregiver strained?
- Changes in a resident or patient’s behavior, level of incontinence or sleep cycle should be reported as this could be a sign of a health complication.
Caring for a person with dementia
Remember the person inside. In order to provide good care for a person living with dementia, you need to know what their interested are, music, food and other hobbies can provide good distractions and a sense of comfort. When arranging outings or activities, keep them short. If an activity takes too long, they may lose interest or become fatigued. The golden rule always helps here, treat other how you want to be treated. This can be especially frustrating for family members that remember the person “they knew” instead of the person they are now. Sometimes, people with dementia may revert back to an earlier time or place and forget loves ones. In times like this, you must reach out to friends, family or a professional for help. Neither the person with dementia or the caregiver is to blame, this can be difficult to reconcile. It is important to remember the disease is causing this, just like diabetes causes high blood sugar, they have no control, but they are still an individual with needs.
Empower them. Sometimes it only takes a small task or a small choice to give a person back their dignity. Helping to fold laundry (even if it is not done the way you want) or choosing what is for dinner (even if it is lunch time) can create a special memory and a moment of peace.
Ask for help. When a caregiver is stressed the person with dementia can pick up on it and will often react to a sense of anxiety. This will only make tasks more difficult.
Be aware of caregiver stress. Caregiver burnout is real. Sometimes it is necessary to take a break or again, ask for help to prevent errors or potentially harmful situations. In the home setting there are caregiver support groups, in the professional setting you should speak with your supervisor regarding your stresses. Ask for help early and often, people often wait until it is too late and they are completely burnt out.
Do not take behaviors personally. A person with dementia is not in control of the behaviors or thought processes. At times they are unable to think beyond the present moment and emotion they are presently experiencing.
Keep calm. Again, a person with dementia may not be able to identify specifically that you are becoming inpatient but they are able to sense the anxiety and frustration. They may not be able to deal with the emotions they are perceiving and therefore they react to the emotion. It is important not to interrupt and to let them know you are listening.
Do not argue or correct. In order to facilitate cooperation or keep a person with dementia safe, the caregiver must at times be creative. Listen to them and try to figure out what they are trying to communicate. If it is not of consequence then just let the matter rest. For example, if they get dressed and insist it’s time to go to work even though they’ve been retired for years, tell them it’s Saturday.
Limit distractions. If at all possible, maintain a quiet environment with as few distractions as possible. Keep the volumes on the TV or radio down when trying to communicate or move to an area where there are fewer people.
Offer reassurance. When a person with dementia is anxious or having difficulty communicating, it is important that they feel that you are not in a hurry or frustrated with them. Reassuring them that you are listening and they can take their time may help to put them at ease. Offering a guess may help them but be careful not to try to speak over them. Affirm their feelings as well. Touch is a powerful way to provide reassurance as well, giving hugs and hand holding. People, no matter where they are in their journey, want to feel as though someone cares!
Routine. People with dementia, especially in the early stages are able to function better with routine. This may also include having familiar objects and caregivers around. They may not always be able to recall names or faces but familiarity can also be reassuring. When a person with dementia has to move to a new environment or go to the hospital due to illness, this can often lead to challenging behaviors.
Use other methods of communication. Gesturing, facial expressions, body posture and body language are all methods of communication. Often, when a person has dementia, they are unable to communicate verbally but pick up well on alternative forms of communication, either intentionally or unintentionally. If you need to repeat something more than once, try to rephrase it.
Keep it simple. Try to be thoughtful about your word choice and speech. Use clear, concise speech and avoid jargon. Keep your speech even and audible but avoid high pitches. Also, be clear about your intention. For example, if you say “We are going to take a shower,” to someone with dementia, they may infer that you are going to get in the shower with them, which may frighten or confuse them.
Remember to laugh! We have all heard the phase, better to laugh than cry, in one form or another. When caring for a person with dementia you must keep your sense of humor, for their sake and yours! If you take every moment seriously, you may miss out on the special moments that make all your care worthwhile! A smile, a song a shared memory, even if that memory has been shared 100 time! That is what makes all of our lives worth it!
September 2015 events in Grand Rapids area raising awareness and funding for research on dementia:
Porter Hills’ picnic – Friday September 11th 10:30a-1:30p at our Porter Hills Village campus 3600 East Fulton Grand Rapids, MI 49546. All you can eat hot dogs, hamburgers, chips, brownies, iced tea and water for $5. All proceeds will be donated to the Alzheimer’s Associations for the annual Walk to End Alzheimer’s. The Community is welcome!
Alzheimer’s Association Walk to End Alzheimer’s at Millennium Park. 1415 Maynard Avenue Southwest, Grand Rapids, MI 49534 Registration beings at 9 am, Ceremony begins at 10 am and the Walk begins at 10:30 am.
- www.alz.org – The Alzheimer’s Association
- www.who.int – The World Health Organization
- www.ninds.nih.gov – The National Institute of Neurological Disease and Stroke
- www.nimh.nih.gov – The national Institute of Mental Health
- http://www.in-themoment.com/ – A website resource that draws the Parallels of Alzheimer’s and Improvisation- tips for caregivers
- Creating Moments of Joy. Purdue. Jolene Brackey, 2007. A wonderful book to inspire caregivers!
- Teepa Snow’s Tips – You Tube videos to help caregivers understand dementia and provide better care.