Showing empathy for dementia grief, care partner types, and challenges.
Judgment comes in a lot of shapes and sizes. When it comes to dementia, some of the most common judgments I hear are:
- She is in denial. She needs help.
- She is not telling her doctor the truth.
- He is wasting his money on scams claiming a cure.
- No one visits him, not even on holidays.
- Her daughter is driving me nuts with her over involvement.
- He never does anything to help.
When we hold onto judgment, it may impede our ability to provide the best service possible to not only the person with dementia, but their care partners. So, it is important to understand so we can appropriately show empathy.
When there is a dementia diagnosis, a person may experience stages of grief and everyone grieves differently. Kubler-Ross discusses grief in 5 stages. These stages are not steps, so one may not experience every stage or they may experience all of them multiple times. There is no pre-determined order.
Denial helps us survive the loss. During this stage, life usually feels meaningless and overwhelming and there is often a feeling of numbness. But this stage allows us to pace our feelings of grief in a way we can handle it before beginning the healing process. During this stage, a caregiver or person with dementia may try to find solutions or ignore that something is happening.
In a person with dementia denial can look like:
- Refusing medical care
- Denying the challenges to the doctor
- Using jokes for their mistakes due to cognitive impairment
- Hiding Challenges
In their care partner they may:
- Deny that they have a challenge all together or say “It isn’t that bad” or “it isn’t full blown dementia.”
- They may leave the person home alone or allow them to drive
This may be with a higher power. Often times, the person is attempting to make deals for a cure out of desperation and intense grief. The person may not be in denial but may grasp at straws for solutions or cures.
The person with dementia may:
- Spend money on different cures
- Change their lifestyle
- Pray or beg
- Volunteer or donate for “good karma”
Care partners are similar in that they may pray, beg, or donate. But they may also:
- Ask for several second opinions
- Invest money in potential cures. Sometimes, 10s of thousands of dollars.
This is a necessary stage. It isn’t an unhealthy emotion, in fact it is necessary. Anger is not always directed at anyone in particular. Sometimes it is at the world in general, or a higher power. Other times, it can be at people involved in the care of the person with dementia.
In the person with dementia anger can look like:
- Physical aggression
- Verbal aggression
- Becoming angry at doctors
- Becoming angry at care partners
- Anger directed at themselves.
In the care partner we may see:
- Anger directed at care staff
- Getting into arguments with friends or coworkers
- Anger directed at the person with dementia
- Yelling at the doctor or demanding more attention
The grief is so great it feels as though it will last forever and it is hard to do anything. This is a normal stage of grief but may still require psychiatric care to overcome.
More specifically, in a person with dementia it may look like:
- Sleeping more
- Change in appetite
- Adjusting clothing
Care partners may show it differently:
- Unexplained ailments
- Loss o interest in activities
- Taking less pride in their appearance
- Difficulty sitting still or concentrating
Acceptance is not the same as being “OK” but it is the acceptance of the reality of diagnosis, meaning, and progression. At this stage, the planning may begin.
The person with dementia may:
- Making plans with attorneys or doctors
- Viewing assisted living communities
- Developing their treatment plan or wishes
- Attending early engagement programs for people with dementia or support groups
Care Partners may:
- Attend education seminars
- Discuss finances
- Ask the person with dementia about their wishes
- Looking into their care options
- Begin assessing or modifying the home
Types of caregivers
Many caregivers report that they began grieving at the stage of the diagnosis and did not stop until the end of the disease or beyond. I have noticed that even the caregiving roles can be a form of grieving. There are four types of caregivers I commonly see:
Doing it all
This is the person who has a mile long to-do list and still manages to do it all. They’re great at getting things get things done quickly. They can be really easy to work with. However, they often take on too much responsibility may get burned out or become resentful.
I encourage my client’s care partners who are “doing it all” to:
- Choose 20% of tasks to delegate.
- Identify areas for self-care and schedule at least 5 minutes a day. We increase the amount of time every 1-2 weeks.
Keeping the distance
This person stays away. They may be uncomfortable with interacting with the person with dementia, unsure of how to help, or grieving in solitude. They give little input so they reduce the risk of interference. If they continue to keep the distance, they may feel regretful that they weren’t involved enough. Sometimes, they do not know how to express their grief or ask for help to close the distance.
When you have a client, family member or friend like this, I advise you to:
- Help others to understand differences in grief.
- Encourage the client to explore their feelings
- Suggest shorter or less frequent visits
- Provide person-centered ways to engage. They should be centered on both the family member and the person with dementia. For example, if the family member hates singing it wouldn’t be a good idea to suggest they sing to the person with dementia.
This person makes frequent visits to the community or is constantly helping with the in-home care. They want to be kept in the loop and want to make things as great as possible. Sometimes, though, they may interfere on progress, unintentionally, or lose focus of the positive things.
If you or someone you know is like this you may want to:
- Utilize a care manager as a middleman.
- Focus the small victories. Did the person call their community “home” or hug a hired care giver when they walked in the house? These are the small victories!
Waiting for Direction
This person is open to helping and will take direction well. They will get things done when they’re asked. However, they won’t take much initiative without direction. If not directed, they may appear as if they’re “keeping distance.”
For those who may be waiting for direction I advise:
- Encourage this person to ask, “How can I help?”
- Take initiative to help by looking at list
- May help by speaking to person keeping distance
Care partner challenges
Working with families can be a challenge due to personalities, but there are specific challenges I see that com up. So, in addition to different caregiving involvement types, I see common challenges among the families I work with.
- Stigma: There are very few, or no, positive messages about dementia out there. This prevents people from wanting to talk about dementia, get a diagnosis or even ask for help.
- Misinformation/Misunderstanding: There is some bad information out there! People may believe dementia can be slowed, cured, or reversed. They may also have very little information regarding the different types of dementia or what resources they can access.
- Lack of education: You probably searched for an article about dementia and found this because you have a personal connection. Very few people seek information about dementia until they need it.
- Personal Cognitive challenges: Sometimes the person caring for the person with dementia may have cognitive challenges himself or herself. This can be tough.
- Financial: Planning for dementia wasn’t common so some may not be able to afford all the resources they need. Or they may need to reallocate funds.
- Physical: The person caring for someone with dementia may be wearing him or herself out. It can be quite taxing and depending on the person’s age and physical ability, it may impact them more.
- Support system: Sometimes there are few or no other family members and the person may have to rely on friends or strangers for support.
- Rural Area: in a rural area, there are less options for resources. In a well populated area, there may be thousands of companies to choose from but in a rural area, maybe only a few.
- Renting: If a person is renting, their ability to make home modifications may be limited. There are still temporary modifications one can make.
- Varying opinions: With too many people involved, it may be difficult to make decisions. If there are separate financial and medical powers of attorney, they may be in disagreement.
- Long distance caregiving: If caring from afar, you may be unaware of the challenges taking place on a day-to-day basis.
- History of familial challenges: Mental illness, abuse, etc. can all play a role in the way families are impacted by dementia. Some may feel resentful of others or of the person with dementia.
- Child caregiver: This is the person who is now doing things they never thought they’d do. A daughter bathing her father or a son toileting his mother. More challenges can come about.
In order to help minimize some of these challenges, I recommend the following when working with families impacted by dementia:
- Encourage questions about dementia
- Determine their level of understanding about dementia by asking clarifying questions
- Involve families in treatment plan development
- Recommend support services for family
- Direct to education: books, seminars, consultant, financial advisors, attorneys, etc.
Instead of judging the decisions family members have made, the way they grieve, or how they show up (or don’t show up) for the care of the person with dementia, apply empathy. Some ways you can do that are:
- Open up about some of your own personal challenges
- Offer physical affection when appropriate
- Focus your attention outwards to interpret responses.
- Withhold judgment
- Offer resources
The next time you are frustrated with a client or frustrated that someone doesn’t receive visitors, consider some of the impacts that dementia and personal history may have on the persons involved today. Apply the skills of empathy and provide resources when necessary.