There is currently no cure for dementia. Therefore, it is essential to maintain a good quality of life for those with a diagnosis. Quality of life can be defined as ‘the standard of health, comfort, and happiness experienced by an individual (or group)‘. For all of us, this is multi-dimensional. Subjective experiences take a front seat in fostering feelings of well-being and contentment.
Spirituality is increasingly identified as an important dimension of quality of life. It is linked to better health, greater psychological well-being, less depression, and less hypertension. Furthermore, spirituality has also been shown to improve the ability to handle stress.
Millions of people around the world are affected by dementia. When illness strikes, particularly a condition like dementia, many people feel the need for faith and spirituality all the more. Many are part of a local church, chapel, temple, or other places of worship, with faith having played an important role throughout their life.
Spirituality is a broad concept with different meanings for different people. For many, it involves connecting to something bigger than ourselves. This can involve feeling uplifted as we connect to nature, listening to classical music, or watching the sunset go down.
So, how can we support a person’s spiritual life alongside the complex challenges dementia can bring? This article explores how spiritual well-being can offer meaning in the lives of people with dementia. And, therefore, improve their quality of life.
What is spirituality?
Spirituality is a broad concept with room for many interpretations. For most people, it reflects the knowledge that there is something greater than ourselves. In general, it involves a search for meaning in life. It can be connected to religious faith, although it doesn’t have to be. For many people, it can be a more personal endeavor. For many, it can be as simple as being rooted in being at one with ourselves, others, nature, or even the arts.
John Killick, the founder of dementiapositive.co.uk, defines spirituality as:
“that which lies at the core of each person’s being:
an essential dimension that brings meaning to life.”
How can spirituality help in living well with dementia?
A new diagnosis of dementia within the family can present challenges to the person and those who love them. However, spirituality can offer the opportunity to look past the disability associated with disease to something far more significant. It can help place the person, rather than the illness, at the centre. It can offer hope, meaning, and purpose in moving forward.
Every person with dementia is unique. When discussing spirituality, we must consider the personal belief system of those involved. This helps create a personal concept of spirituality, which is distinct and relevant to that person.
In this article, we take a look at some of the benefits of nurturing spirituality as an avenue for offering person-centred care. We discuss how this can help in living well with a diagnosis of dementia:
The search for meaning
As humans, we all need meaning. Searching and finding it is the core of spirituality. It gives purpose to changes in our life circumstances. From this stance, we find hope in challenging times, allowing us to connect with family and friends. It can help us in practical ways. It can give us the strength to develop coping and practical strategies in our day-to-day lives.
Research has found that an ongoing spiritual life can slow the progress of cognitive diseases such as dementia. It can help offer ways to cope by finding meaning and hope.
Dr. Jennifer Bute, a retired GP diagnosed with Alzheimer’s dementia at the age of 63, shares her journey with dementia. She has called upon her faith to help her in her determination to help others with the condition. She refers to the glorious opportunity -as “a god-given unexpected gift in order to understand this hurt section of society”. It isn’t easy to be anything other than truly inspired when listening to Dr. Bute. She is a regular speaker and contributor to raising awareness of the importance of spirituality in dealing with dementia. She shares her thoughts on living with dementia in her book, “Dementia from the Inside: A doctor’s personal journey of hope,” which can be found here.
A Reminder of Our Value
Our spiritual lives often guide us to explore a sense of meaning in our lives. This can lead us to understand our own values. Spiritual activities for those with dementia are a reminder that this condition does not diminish those values in any way. It can help us find the road back to self-identity. It can help us connect with aspects of life that have always been important to us.
A deeper experience that goes beyond our cognitive function can be ignited in sacred spaces and activities. Put simply, it can bring us a sense of peace. This stretches beyond understanding and, as a result, is so life-giving to those with dementia.
Social Interaction and a Sense of Community
Too often, people with dementia begin to feel disconnected from those around them. Companionship and a sense of belonging when attending a place of worship can bring feelings of belonging. This can be gathering together for a service or time spent in prayer with someone else. Even if you aren’t religious, spiritual activities can help to break people out of a sense of isolation. This is accomplished through the simple act of gathering together with others.
Speaking the exact words or singing the same hymns can have a powerfully unifying effect. It can help remind us, on a deep level, that we are not alone. Research has found that social interaction has also been vitally important in improving the outcomes for people with dementia. Just ten minutes per day has been shown to have a measurable effect on well-being.
Participating in spiritual activities can mean contact with a local priest or other spiritual leaders. This can also help remind the person of the outside world that may be deeply missed. This interaction has the double benefit of social interaction with people outside of the home environment. Attending mass or a religious service on a Sunday or special day can provide contact within the community that can act as a lifeline for many.
The Importance of Rituals
Participating in spiritual activities may take us into different spaces. Examples of this can include chapels, churches, temples, and mosques, where another side of ourselves is engaged. As dementia progresses, it may not be possible for the person to interpret scripture. It can be difficult to comprehend the meanings or carry out many religious practices and rituals. A Catholic may no longer understand the meaning behind the receiving of the Eucharist. It may be difficult to understand the purpose of praying the rosary. A Jewish person may not be able to maintain a kosher lifestyle. It may be difficult to honor Yom Kippur. Similarly, a Muslim may have difficulty participating fully in the ritual daily prayers or participating in the Ramadan fasts. However, it is essential to remember that a lack of cognition does not take away the comfort and spirituality of observing rituals, sacraments, familiar prayers, and hymns.
The Comfort of Recall
For many people, prayers such as the Lord’s Prayer were learned in early childhood. Prayers like this can become one of their most deep-seated memories. Likewise, hymns and spiritual songs may have been sung since our earliest years and are deeply rooted in our memories. Many of the religious services that people attend follow a familiar pattern, using familiar words.
To hear these familiar words again and even to find oneself recalling them can bring a deep sense of comfort. Remembering the words of familiar hymns can also be uplifting, giving the person a sense of self and belonging. In a world where much may seem confusing, returning to these familiar words and songs can be calming and soothing. Practices that have been carried out since childhood can help people connect to faith and who we are as people.
Keeping our Hearts Open
In the context of dementia, perhaps this can be referred to more as ensuring the heart does not close. One of the greatest gifts we can do is to connect to the reality of a person living with dementia – rather than bring them into a world they find difficult to understand. Meeting spiritual needs can be achieved through calm human presence and contact. All we need is a gentle touch, paying special attention to body language or nonverbal clues. We can tell the person the story of their lives through pictures, words, and everyday objects honoring the person behind the diagnosis.
Dementia can gradually block off the ability to recognize people. This can lead to family, friends, and caregivers all becoming detached strangers. However, the brain maintains emotional recognition of that person. This ensures that the presence of a loved one can continue to bring joy, comfort, and peace. There is the emotional connection of how the person makes us feel. Writing a poem together, listening to music and art, and being out in nature all feed our spirits. They help promote spirituality, giving meaning and purpose. In short, the essence of the person remains.
Staying Connected
Remaining connected to family members and friends can be an important part of maintaining spiritual life. As a caregiver, it can be so easy to focus on the practical aspects of caring while overlooking the person. Doing things together as a family can bring feelings of spirituality and connection. Many people can feel uplifted spirituality by nature. This can be as simple as walking outdoors or smelling the aroma of flowers. It can involve simple pleasures such as listening to birds, looking at the stars at night, or watching the waves on the shore.
Often, just feeling the presence of another human being and carrying out small acts together can heighten feelings of well-being. Listening to music together, arranging flowers, or folding laundry together are all examples of keeping connections open and alive.
Adapting and Evolving
Engaging in a way that benefits our loved ones requires careful thought and skill. Returning to familiar patterns and words can be of great comfort. Simplicity often works best alongside the careful use of items to engage the senses and well-chosen music.
However, above all, the spiritual care of those with dementia requires diligence and love. Perseverance in offering to someone what we know has been of such value to them in their life is important. Sharing simple and familiar prayers, music, rituals, and sacraments is also a wonderful way to lift the spirit.
Spiritual care of those with dementia is vital for their well-being. It offers an ongoing connection to and interaction with the community that can be truly life-giving. Participating in spiritual activities can ignite memories and bring the comfort of connection to the past. Most importantly, it can be a tangible reminder of a person’s ongoing value. It can help them find meaning and hope amid their diagnosis.
The quest for spirituality does not end with the diagnosis of dementia. Indeed, it may be at this time that the need for support and spiritual care increases. Often, it can help in the search for meaning and coming to terms when life and personhood itself seems threatened.
To neglect the spiritual dimension of a person is to neglect a vital part. On a deep level, it neglects what makes a person who they are. Attending to this part of a person can bring significant and long-term benefits that should not be overlooked.
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For further information, please also find some additional resources below:
Praying with people with dementia
The sacrament of reconciliation
A Jewish response to dementia: honoring broken tablets
What happens to faith when Christians get dementia
Dementia and spirituality: a Christian perspective
Cultural and religious needs of people with dementia
Dementia inclusive church guide: Travelling together
A literature review of spirituality in coping with early-stage Alzheimer’s disease