Dementia Together: Why Connection is Key

“Family and Friends are uncomfortable and say they don’t know how to behave ‘normally’ around me anymore – they didn’t really give our relationship a chance to move forward.”

Receiving a diagnosis of dementia in the family is a life-changing event, both for the person with the new diagnosis and the family as a whole. Facing dementia together is key to well-being for all. This is important as a new diagnosis in the family can come with a great sense of grief. In processing feelings of grief, we go through various stages, including:

  • feelings initially of denial (the act of rejecting reality), 
  • followed by anger (realising the truth but still not ready to accept it), 
  • feeling low or depressed (coming to accept the news), 
  • “bargaining” (navigating the “what if’s”), 
  • acceptance (acknowledging the condition without judgement).

Diseases such as Alzheimer’s disease and other forms of dementia bring a fear of the future and what lies ahead. One of the key things associated with this is a fear of losing connection with people close to us. This is felt by the person with dementia and the spouse, partner, friend, and anyone with whom a relationship exists. This is a natural response because of the symptoms associated with dementia, such as loss of short-term memory and difficulty remembering names and events. It’s not an unrealistic reaction when faced with such a diagnosis.

However, life doesn’t suddenly change overnight. There is still a life to be led. And as such, some steps can be taken to make moving forward easier with a new diagnosis of dementia together.  Staying connected and nurturing feelings of togetherness is one of those things.  

In this article, we take a closer look at why, as humans, feelings of connection are fundamental to our life, why it is particularly important when we receive a diagnosis of dementia in the family, and some of the steps we can take to remain connected while living and caring with dementia. 

The Importance of Connection

We are all social animals.  Being together and having a connection with others is a core human need.  It fills us with feelings of well-being and a sense of self, and contentment. Healthy, meaningful relationships and feelings of belonging to a group with which we identify is a complete support system in itself.

“We are hard-wired to connect to others. It’s what gives purpose and meaning to our lives, and, without it, there is suffering.” (Brene Brown)

Life changes when a family member receives a diagnosis of any health condition, but as people, we don’t—the person within remains. The need to connect with others doesn’t just disappear. On the contrary, it increases. Greatly! 

When we encounter life-changing events, it is half the battle when we can go through it together with someone with whom we feel a strong sense of connection. Sticking together in hard times is what makes us people.  Upon receiving a diagnosis of dementia in the family, it’s important to remember these fundamental aspects of life. 

The Dementia Label

Feeling connected is essential for all of us.  People with a diagnosis of dementia are no different. Unfortunately, the negative stigma associated with this new diagnostic label positions people with dementia as in despair, unable to act in socially acceptable ways.

As a result, friends can start to disappear. This can lead to people with dementia – and family carers – feeling lonely quickly.  Unfortunately, the diagnostic label takes up centre stage.  Studies show that people with dementia will begin to withdraw, driven by the fear of making mistakes in public. 

It is, therefore, important to see past the label to the person still there, living and breathing in front of us, with the same likes and dislikes, feelings, and emotions. People with dementia themselves are well aware of how life changes as they strive to be more than the label imposed upon them.

Looking Past the Label

Of course, our relationship may change when a family member is diagnosed with dementia. It may never go back to the way it once was. However, we can develop a new relationship that is still based on feelings of trust, closeness, and security. However, to do that, we must maintain a connection. In short, we face dementia together, as one.

On receiving a diagnosis of dementia, people with dementia report wanting to “just get on with life”.  To do this, remaining socially connected with family, friends, and the wider community is vital.

Feeling loved helps maintain connections no matter what the circumstances in life.  It helps reduce the possibility of creating a physical and emotional gulf between previously connected people.

Many people with a diagnosis of dementia purposefully set out to do this.  Many take active steps themselves to continue to be the best they can be, despite their diagnosis.  The Scottish Dementia Working Group is a national campaign group run by people with dementia. They are involved in research, raising awareness, and campaigning for the rights of people with dementia. Many other people have also made it their life purpose to raise awareness of dementia. Kate Swaffer from Australia has dedicated her life to this cause.  In true Aussie style, in this video, like a breath of fresh air on the dementia circuit, she clearly shares her thoughts on moving forward with dementia.  Changing the negative stigma surrounding dementia is key to supporting the rights of people with dementia and their family carers. The only way to do this is through such grit and determination to see beyond the diagnostic label.

Keeping Connections Alive

Everyone’s journey with dementia is different. This is down to several factors, including the type of disease associated with dementia (e.g., Alzheimer’s Disease, Vascular Dementia, Dementia with Lewy Bodies, and other dementias), symptoms, stages, life circumstances, personal history, support, and much more. Unfortunately, the term “dementia” is one label on a large spectrum of different experiences and prognoses.  

Research tells us that often people with dementia can experience something called “excess disabilities“, whereby disability and decline exist that is over and above what is expected. In other words, this can be caused by a lack of use of the person’s retained skills instead of dementia-related symptoms.  Excess disability can also be associated with reduced feelings of connection, social withdrawal, and feelings of loneliness. It is, therefore, vital to stay connected.

dementia care at home staying connected wellness outlook relationships etc

How can we ensure our communication and environment supports this “dementia together” concept?

Every human being picks up on how another person behaves around them.  Because someone has a diagnosis of dementia doesn’t make them different in this way. As a family, facing dementia together offers the opportunity to keep the connection alive. As with any relationship, the more positive impressions are made after each interaction, the feelings of being loved and connected will grow.

  • Make good use of non-verbal cues.  Body language communicates how you feel and think more than words. A warm smile, soft voice, and gentle touch convey a message of trust, warmth, and affection.   Family members at home with dementia identify and respond to gestures of love and the sensation of touch.  A hug, affectionate hand squeezing, and a gentle touch on the shoulder can help us stay connected.  Our loved ones still crave a sense of belonging.  They still understand the meaning behind a smiling face in front of them or a warm, loving hug wrapping around them, so building and continuing to make that imprint – moving forward together is vital.  You may find you are repaid tenfold in reciprocation.
  • Limit distractions and noise. As dementia progresses, many people can have a reduced tolerance of sound.  The noise from a TV or radio that we find acceptable may be distressing for someone with a diagnosis of dementia. Anyone with an impaired capacity to think and focus will benefit from minimising meaningless background noise.  With competing noise in the background, the person may have difficulty hearing or understanding conversations. Therefore, having conversations that are face-to-face and free from distracting noise will help the person with dementia focus on one interaction at a time and allow them to process the exchange and interaction in a calmer and more relaxed fashion and therefore find it easier to connect.
  • Listen with your heart.  If your loved one is struggling to reply, allow them time.  Encouraging non-verbal cues can help relieve the pressure, making them feel more relaxed.  Watch out for non-verbal cues and body language that may help decipher their feelings. It’s all about connection.  
  • Redirect or change the topic if need be.  If your loved one shows any signs of distress or upset- perhaps they can’t recall something and become frustrated or irritated – this is natural. Help the person out; change the topic or divert their attention to a new area of interest.
  • Offer ongoing affection and reassurance. People with dementia often feel frightened, confused, and out of sorts with themselves.  It helps to stay focused on comforting, supporting, and reassuring them.  It’s the disease. Not them.
  • Keeping a sense of humour.  Humour helps keep things light, and laughter helps build our connection with each other. Humour is great for everyone. It releases stress and anxiety and makes us feel one together.  
  • Supporting ongoing activities. One of the best ways to maintain a connection with a family member with dementia is to continue to do activities together. Often the ability to be the “expert” in different areas of life and around the house will diminish. However, there will still be things at home that your loved one can engage in. Washing up after dinner, setting the table, folding the laundry, planting flowers in the garden – all things that can be done together, which gives feelings of “us” moments together. Rather than focus on what the person can no longer do, we can focus on remaining skills and how we can keep these alive.
dementia self care staying connected dictionary definition of together image
Excerpt from Dementia Caregiver: With You. For You. About You.

Staying connected is important for everyone at home.   Even in advanced-stage dementia, I was able to connect with my mother. She may not have known my name, but she knew I was someone close to her. She “knew” me in her own way, and I couldn’t ask for more. That connection remained.

Thank you for reading. 

If you have found this article helpful, please like, share, and comment.

Please also check out our other articles on self-care for family carers and therapeutic interventions for people with dementia.

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