When caring for someone living with dementia, attending to everything the person needs support with can mean something vitally important can be missed out – their spiritual well-being

10 April

When caring for someone with dementia it is so easy to become totally focused on the practical aspects of caring – making sure they are eating properly, ensuring  safety, dealing with sleep problems and maintaining good physical health. There is so much it can become overwhelming. In the process of attending to everything else something vitally important can be missed out – their spiritual well-being.

You might be tempted to assume that, because they have severe memory loss or difficulties communicating, that their spiritual needs are no longer important. It’s also easy to think that because your loved one is not religious it is not something to be concerned about. You would be wrong! This is something which can have a profound effect on the person both emotionally and physically, and be expressed in their behaviour.

What is spiritual well-being?

When thinking of spiritual matters many people set this in the context of religion. However, people with no religious faith still have belief systems that give meaning and purpose to life. This might be expressed in terms of their relationships, family, creativity, their culture or interest in nature. In addition the search for meaning and a need for emotional connections become more significant as we age and are faced with increasing cognitive and physical frailty. This is when we turn to our values and beliefs to help us make sense of what is happening, to find hope and prepare for what is ahead.

Essential human requirements may include a need to:

  • Be supported in dealing with losses of relatives, friends, independence, good health, memory, etc.
  • Maintain a sense of self and personal identity
  • Be respected, valued and appreciated as a person
  • Feel recognised, known and understood
  • Belong to and to be involved in the community
  • Forgive and be forgiven
  • Receive unconditional love
  • Retain personal dignity
  • Find meaning, purpose and hope
  • Be supported in any religious and cultural beliefs and behaviours
  • Express anger and doubt

These are spiritual because they are all to do with our internal experience of life and are linked to our sense of identity. This makes it essential to keep seeing the person rather than the dementia. Compassionate caring is more than seeing and addressing medical, physical and occupational needs.

How do you know spiritual support is needed?

When the person is:

  • Acting like they are being abandoned or making statements that they feel lost or alone
  • Experiencing feelings of guilt or that they are being punished because they have been wicked or wasted their life
  • Feeling bitter or angry, making statements such as ‘This is not fair’, ‘I don’t deserve this’, ‘I’m useless’.
  • Searching for meaning or purpose in life. They may feel they have lost their sense of who they are because of loss of role in life or independence.
  • Feeling life is hopeless and pointless, wanting to give up. They may make statements such as ‘What’s the point?’, or ‘I might as well be dead.’
  • Becoming weepy, agitated or confused because of their fears, not being able to verbalise their feelings or understand what is happening to them.
  • Feeling you don’t understand or care what is happening to them.
  • Grieving the loss of a relative, home or their independence

Providing spiritual support

Can a person still retain a spiritual connection to nature when they have become housebound? Can religious or cultural traditions still have meaning, even though they are unable to remember prayers, readings or what was said a few moments ago?  The answer is an emphatic ‘yes’. The effect is both calming and reassuring. Support can be given through:

The creative arts

The arts – music, dance, painting, drawing, writing, sculpting, theatre, craft, embroidery, flower arranging – take us away from everyday routine and fulfil the spiritual need for creative expression. They also give us opportunity to reflect on life and our place in it, meaning and purpose.  The person may be able to do some type of art, move to rhythmic movement, tap a beat, play an instrument, listen to, recite familiar poetry or contribute to creating rhymes

Example activities might be:

  • Listening, moving or dancing to music
  • Decorating cakes
  • Looking at or making scrapbooks
  • Writing simple poems together or making up stories
  • Compiling a life history
  • Singing and reminiscing about favourite songs and the memories associated with them
  • Making decorations for special occasions
  • Reading or listening to favourite stories

These can be built around creative interests the person has enjoyed in the past.

The wonders of nature

Many people respond to and feel spiritually fulfilled by nature. They love the great outdoors, smelling the aroma of blossoms, hearing bird calls, working with the soil, seeing and touching animals. My mother loved animals, horses in particular, and was happy when – in her mid-nineties – we found a care home in which her bedroom window looked out on a field with horses. She spent hours watching them and staff frequently took her to meet them. She would tell stories about her youth when she lived and worked on a farm.

Other wonders of nature activities might include:

  • Watching and listening to birds
  • Looking at a sunset or the stars
  • Planting seeds
  • Walking or sitting in the garden
  • Visits to a park or local gardens
  • Doing nature themed crafts such as flower pressing or making bird feeders
  • Growing plants indoors
  • Visiting animal, bird sanctuaries or inviting someone with a placid animal to visit

What you choose to do will depend on the person’s capabilities – but even sitting in a car with the windows open by a lake or in a nature reserve watching the animals or listening to the birds can be very meaningful.

Friends, family and community

Retaining feelings of connection with friends, family and the community is an important part of a spiritual life. These are the people who share similar traditions, beliefs and values. Difficulties can arise when family members live far apart or indeed in different countries, but this can partially be overcome by seeing and talking to each other, using skype, sending photographs or speaking on the telephone. Another difficulty is that friends are no longer able to visit because they too are unable to drive or are unwell. But opportunities can be created.

Examples are:

  • Doing simple one-to-one activities with available family members such as flower arranging, enjoying listening to music, looking at old photographs of family celebrations, singing along to favourite songs, etc.
  • Celebrating different special times such as Easter, birthdays, anniversaries, grandchildren passing exams, the arrival of spring, etc.
  • Organising fun events such as family quizzes, playing simple card games, making decorations for a special occasion. Many opportunities can be created for two or more family members to get together and in which your loved one can take part and which encourages communication.

Invite the person’s friends and acquaintances to some occasions or organise the event especially with them in mind.

Faith based activities

Support from your loved one’s faith community may be available. In the early stages the person may be able to go services and special activities, musical programmes or days celebrating religious holidays. The faith community may have volunteers who visit those who are homebound and carry out the rituals.

Other things you could organise may include:

  • Watching a religious service or occasion on TV or the internet
  • Visiting the place of worship when the building is quiet and just sitting silently in contemplation
  • Listening to religious recordings
  • Reading or listening to faith readings
  • Making sure the person has religious or cultural items near to hand where they can see and touch them

You know best

Providing spiritual care differs from person to person. Knowing the person well denotes that you are the person who can be most helpful to them. Does the person smile or appear to calm and peaceful when listening to religious music? Do they come to life when a friend, family member or grandchild visits? Perhaps the scent of fresh flowers or baking helps them relax. Is there excitement and interest at the prospect of creating a collage or planting some seeds?

Sensitive and compassionate care that includes those elements of spirituality which have meaning andsignificance to your loved one is essential in maintaining their well-being. Even though you might disagree with some of their beliefs they have the right to the comfort of them. Ensuring they are part of daily routines and activities will also make caring for them so much easier and enjoyable.

This article was written for Carewatch by Robin Dynes. Robin also wrote our Activity guides for people with dementia to help carers enrich the lives of those they support.

Robin has worked in the National Health Service, Social Services and Adult Education for over 30 years as a counsellor and trainer. His main role has been to develop innovative services to meet the needs of older people and others who are vulnerable.