Dementia, Loneliness and Connection

Supporting a Sense of Belonging and Connection in People with Dementia

Photo by Sabine van Erp from Pixabay

*Resident names and any identifying details have been changed for privacy.

September 01, 2021

"Connection is the energy that exists between people when they feel seen, heard and valued; when they can give and receive without judgement; and when they derive sustenance and strength from the relationship."
—Brené Brown, Professor of social work at the University of Houston 
Susanna excelled at pushing people away. Her family never once visited in the time she lived in our Memory Center. After enduring a lifetime of abuse, they couldn’t bring themselves to visit their estranged mother.
She pushed away the staff as well. Although our staff tended to be exceptionally good at bridging the gap of behavioral communication, it seemed Susanna could not be reached – and didn’t want to be.
She was quick to anger and spout accusations, insults, threats or sarcastic, biting remarks. Almost every attempt to connect with Susanna was met with a verbally aggressive response, and over time, most of the staff stopped trying. After all, Susanna clearly didn’t want to interact... right?
Susanna’s behaviors grew ever more caustic, and her outbursts more frequent and intense. She seemed to be looking for fights, and started to behave aggressively towards other residents. We had to figure this out. We had no other choice.
It was our nurse who finally put it all together: “Susanna is so, so lonely.”
We encouraged staff to spend more time with her, to no avail. She didn’t want it any more than they did. “She told me to get out,” they would report, moving on to tend to someone who would accept their assistance.
We decided to take it a step further and mandated every team member to spend at least five minutes every hour with Susanna. They began really trying to figure out when, where and how to best approach her. The first week was awkward at best, but before too long Susanna’s tight armor started to soften.
After a couple of weeks the transformation was truly amazing. Susanna had all but stopped looking for fights and began to really relax. She smiled and joked frequently, sharing her quick wit to connect rather than to attack. She started forming trusting relationships with individual staff members.
Susanna remained a sharp woman with a fiery personality – but now she was primarily happy and good-humored, surrounded and supported by friends in the memory care center.

Connection is a Fundamental Human Need

When we’re connected with others we feel close, loved, cared for, safe and valued. We’re able to form meaningful and lasting relationships.

To connect with others is a fundamental human drive and need. When we lack meaningful social connection – when we feel lonely, disliked, excluded, unappreciated or devalued – we can experience a range of negative outcomes.

- Anxiety
- Depression
- Anti-social behavior
- Low self-esteem
- Aggression
- Jealousy
- Grief
- Hostility

Research also shows that loneliness correlates to a number of chronic health conditions, including heart, lung and cardiovascular disease, hypertension, stroke, obesity, metabolic disease, increased inflammation, and overall morbidity.

On the contrary, feeling accepted and welcomed tends to foster feelings of calm, happiness and a better ability to cope with stress. Connection, and the sense of belonging – or the lack of it – has a big effect on our physical and mental health and wellbeing. 

We Need to Feel We Belong

Evolutionarily speaking, belonging to a group has always been an essential need. It makes sense. We’ve always been much more likely to survive as part of a group than we are on our own.

A wide body of evidence shows that we humans have a natural drive to connect with one another – and also that a sense of belonging is vital for our wellbeing.

Specifically, it’s the feeling that we belong to a group of some kind that makes the difference. The type of group itself seems to be secondary. It could be our:

- Nation
- Political, religious or social group
- Family
- Neighborhood
- School or workplace
- Group of friends

As long as we feel connected to, and actively part of the larger group, we’re likely to feel we belong, and less likely to feel isolated or lonely.

Feeling that we belong in a group entails that we:

- Identify as part of the group
- Feel connected to others in the group
- Participate in the group personally and regularly 

Feeling Unconnected Saps Our Mental Resources

When we feel like an outsider, our brains tend to use more mental energy as they are continually monitoring for potential threats. This means we’re more likely to be on our guard and defensive. We’re less likely to let ourselves relax or engage openly with the world around us.

Because we’re using more mental energy for defense, we have less left over for other uses – like thinking and functioning. When dementia is already limiting our available mental energy, the effect can be pretty profound. We’re likely to see sometimes dramatic changes in:

- Confusion
- Forgetfulness
- Disorientation
- Judgment
- Decision making abilities
- Language skills
- Fatigue levels
- Ability to perform ADLs or function

Feeling like an outsider also releases stress hormones like cortisol, which can further reduce our ability to think and function. Prolonged or frequent stress also has a strong negative impact on our health, and on our brains’ ability to function.   

Recognizing Loneliness in People with Dementia

Possible behavioral signs of loneliness in people with dementia look pretty similar to possible signs of grief, depression or pain – as well as to what many people write off as simply “behavioral symptoms of dementia”.

- Anxiety
- Depression
- Anger
- Social Withdrawal
- Sleep Disturbances
- Low Self-Esteem
- Aggression
- Hostility
- Fatigue
- Losing Interest in Favorite Activities
- Changes in Weight or Appetite
- Difficulty Concentrating or Making Decisions
- Inability to Self-Regulate Behavior or Control Impulses
- Anti-Social Behavior (behavior that harms or disrupts others, invade their rights, or lacks consideration for their well-being)

The key to addressing these symptoms successfully is to first recognize them as the red flags they are, and then to start looking at the situation for clues as to what may be at the root of the issue. Exactly which need is unmet?

Situational signs that might suggest that the person with dementia is feeling lonely or unconnected include that they:

- Have few, or no, strong active relationships with others
- Have few interactions with others on a regular basis
- Don’t participate with groups (passive participation may be enough to meet their needs in some cases, but not others)
- Seem – or indicate that they feel – disconnected from people around them, or that they don’t belong in this world 

Supporting Connection in People with Dementia

To support meaningful connections in people with dementia, we can facilitate or set up regular interactions with others, and we can make a point to connect with them ourselves.

To facilitate connections with others, consider

- Assisting them to eat meals with the same person or group
- Helping set up regular visits in person or over the phone with family, friends, volunteers or paid staff
- Arrange to get them to a regular religious service, or social group

Bear in mind that spending time with just anybody won’t automatically create a sense of belonging. Look for those who share a healthy rapport, common interests, or complimentary social skills. That said, humans are hard-wired for connection, and can often connect with quite a range of people under a wide variety of circumstances. Repeated interaction with the same people helps a lot. 

Support them to Give as Well as Receive

Feeling valuable, useful and able to contribute to a relationship can be an important part of connection as well.

Most of us – dementia or not – wish not only to be taken care of, but also to give of ourselves to others. When we support or provide people we care for with opportunities to be and feel useful, needed and valuable, we bolster their ability to connect as well. 

How Can We Connect Ourselves?

Author and thinker Seth Godin suggests that the first step to connecting with others is to understand that they are always “right”. While he’s talking about connection in any humans, his words ring especially true for connecting with someone with dementia. 

“The other person is always right.
Always right about feelings.
About the day he just experienced.
About the fears (appropriate and ill-founded) in his life.
About the narrative going on, unspoken, in his head.
About what he likes and what he dislikes.
You’ll need to travel to this place of ‘right’ before you have any chance at all of actual communication.”
— Seth Godin

To connect with others we must be present and attentive in the moment. We must be open to connecting and choose to actively listen. 

Decide to Connect 

First, make a conscious choice to connect. 

Establishing the Right Setting 

One on one interaction in a low-distraction environment will usually be most effective.  

Be Present in the Moment 

Being fully present – giving your full attention to the person – may be the most important piece of connection. 

Being present means:

- Actively listening with your full attention
- Showing sincere interest and caring about what they’re saying. What they’re saying is important because they are important.
- Offering a genuine smile (or other expressions / emotions appropriate in the situation)
- Making eye contact
- Mirroring their body language, facial expressions, tone of voice and energy level
- Connecting with touch as appropriate
- Being aware of non-verbal communication (both theirs and our own) 

Be Open and Empathetic 

Keeping an open heart – even when it may feel awkward or uncomfortable – can be a key component of connection. Often, people connect more deeply over the more difficult emotions in life. Don’t be too quick to try to dismiss their sad or negative feelings. Simply holding space for them to process them can be extremely helpful and a really effective way to connect.

Feeling empathy, and usually kindness, is an important part of connection.  

Be Trustworthy 

Trust is an important part of connection, so being worthy of someone’s trust is an integral part of connecting with them. Even people severely impaired by dementia will remember on some level whether or not we can be trusted once we have earned or broken their trust.

People make split-second decisions about whether or not we can trust each other – it’s a deeply rooted survival instinct. Most people tend toward trusting those who are warm, open, authentic, and who appear confident, qualified, experienced and respectable.  

Be Authentic 

Being authentic is vital for connection. We can’t really connect with someone when we’re not being true to who we really are. This doesn’t mean we need to reveal our entire life to our residents – but it does mean we need to be genuine and sincere in our interactions. 

Be Understanding 

In order to connect, we need to understand where the person is coming from, and to convey that understanding effectively. 

Find their Point of View
First, listen to what they are saying, and imagine it from their point of view, taking into account how they are currently perceiving reality.

Don’t Judge
We need to do our best to stay non-judgmental, and to remember that we’re all doing our best in each moment to be the best version of ourselves. Rather than looking down on others for how they’re handling a situation, if we can keep in mind our own worst moments, we’ll be better able to understand and convey empathy.

Just pay attention to what they are trying to convey. Summarize your understanding or validate their feelings every so often. 

Validate their Feelings

It can help tremendously to validate their emotions – to reaffirm that what they’re feeling is okay, normal, right or justified. Identifying and naming a specific emotion the person is feeling can go a long way to helping them feel seen, heard, understood and valued.

It’s generally not necessary to try to offer solutions to their problems – people are often not looking for advice, as much as they need someone to simply hear them and to understand their emotions and reactions.  

Be There for Little Moments Over Time

Don’t discount the little moments of connection with a person living with dementia. Just stopping, making eye contact and offering a genuine smile can make a big difference for someone who may feel lonely and disconnected – especially when you can establish this connection regularly over time.  

“Being listened to and heard is one of the greatest desires of the human heart.”
—Richard Carlson, psychotherapist, author “Don’t Sweat the Small Stuff”

How have you been able to support meaningful connection for someone with dementia?

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