Dementia Gateway: Getting to know the person with dementia

Exploring spiritual needs

Beneath this increasingly jumbled layer of emotion is the true self that remains intact despite the ravages of dementia. This is my spiritual self or transcendent self. It is the 'me' that relates to the beauty of a garden, of the leaves or flowers; it is the 'me' that relates to God; it is my spirit, the essence of me.

Christine Bryden (2005)

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• 1. Introduction: defining spirituality Open

  Spirituality is difficult to define, analyse or quantify. It is generally understood to mean feelings or beliefs related to the search for meaning and purpose in life. It may or may not include a belief in a higher power (such as a god or several gods) or the supernatural world. Each person searches for meaning in life in their own way, but spiritual beliefs usually bring together ideas about ourselves, our relationship with others and with the world.

  Religion is closely linked with spirituality, but the two words mean different things. A person may have an active spiritual life without considering themselves to be religious or being involved with a religious organisation.

• 2. Person-centred care and spirituality Open

  Having knowledge and understanding of a person's spiritual beliefs is part of person-centred care. It is a vital way of connecting with that person and making sure their needs are met holistically. In a multi-faith and multicultural society, this means knowing or being prepared to find out about a range of faith traditions. It means making links with organisations and individuals who can offer spiritual support to the people you are working with. You may need the expertise of, for example, a rabbi or imam, or the help of information resources to improve the knowledge in your care team. You can find lots of information about religion on the internet. For example, the BBC's website has a useful comparative guide to religions (see www.bbc.co.uk/religion/religions). Spiritual care is everyone's responsibility.

  It also means care staff being able to give a person with dementia undivided and unhurried attention (with the necessary support from management). Only with time can care staff come to understand what a person is trying to say, and to grasp the expressions – so often non-verbal – that have a possible spiritual meaning. This includes encouraging care staff to take an interest in the life story of the person with dementia and make links to possible spiritual needs. For example, care staff may learn that the person loved spending quiet time outdoors, visiting gardens. In this situation, the care provider should work hard to facilitate access to this type of environment.

  Person-centred care planning should involve recording how the person with dementia would like to express their religious or spiritual practices. If the person cannot communicate this, care staff should ask family or significant others what practices were important to the person before they developed dementia.

• 3. Religions and rituals: what care staff need to know Open

  Established religious practices may offer a way to maintain and nurture a person's sense of meaning. Professionals should not side-step these, or view them as private, insignificant matters: they are highly relevant to care planning.

  Religious ceremonies and rituals may draw on valuable long-term memories. For example, saying familiar words such as the Lord's Prayer, a favourite hymn or passage of scripture may bring peace to a person with dementia who has a lifelong Christian belief. Whether he or she understands the words may not be clear, but the act of having it read, sung or played may still have a powerful impact.

  Rituals relate to practices such as prayers (when, how) and food (its preparation and at mealtimes). These may be visible, precious routines for the person, and to overlook them would be a serious oversight. Giving thanks for food in the manner appropriate to the religion of a person with dementia will give meaning and stability to the person. There is evidence that this capacity remains in advanced dementia (Killick and Allan 2001).

  Religious festivals and events may have important rituals associated with them, so it is important to be aware of significant dates in the religious calendar and to check whether the person observes these.

  Religious objects can also play an important role in a person's life. They may bring the person a sense of peace and a comforting connection with their past. For some Jewish people, ritual objects – such as the tallit(prayer shawl), kippah(head-covering) or kiddush(cup) – are very important. In many religions, praying involves using certain objects, for example, rosary beads and chaplets (strings of beads) used in Roman Catholicism. Prayer beads are also widespread in Hinduism, Buddhism, Islam and Eastern orthodoxy.

• 4. Spirituality and facing a serious illness Open

  When a person receives a diagnosis of dementia, their spiritual and religious beliefs may be shaken, even lost, as the person asks 'why me?' They may find it difficult or be reluctant to express their grief or anger. At these times, spiritual leaders may be able to offer the person sensitive, informed support, perhaps through counselling. Care providers should be alert to this possibility and make contact with the spiritual and religious leaders within the community, should this need arise.

  On the other hand, some people with dementia and their carers may develop a new or renewed interest in faith and religious practices when faced with a crisis. Some people may find comfort through the use of music, pictures or objects, and care staff should be attentive to drawing on these resources to support the person.

• 5. Nurturing hope for people with dementia and carers Open

  Hope can bring meaning in a person's life and help them face difficult times without despair. It is future orientated and experiencing hope provides strength to cope with painful and stressful events, such as receiving a diagnosis of dementia. For some people, God may be the source of hope. For others, it may be family or an important person. For care staff, finding out what brings hope to the people you work with can be very powerful.

  Carers may find great difficulty in letting go of hope that the person with dementia will improve. Both the person with dementia and carers may place unrealistic hope on the potential for dementia drugs to improve the condition or even effect a 'cure'. Finding hope is a means of coping with adversity and professionals need to be aware that even when hope is unrealistic, people must find their own way to make their own meaning.

• 6. Advanced dementia and spirituality Open

  As dementia progresses, a person with dementia is likely to have greater difficulty understanding religious concepts and phrases. Their memory and ability to speak or comprehend will get worse, and care staff will need to turn to different approaches to support the person's spiritual needs.

  The person may still be able to sing or say a few words of a prayer, hymn or other practice related to their religion and this could offer valuable spiritual comfort to them. Remember that simple things can be very powerful. Using touch (of objects such as a rosarie), going to a religious service (without necessarily actively participating) or a place of nature, or singing are all examples of activities that may bring peace and a sense of calm to a person, even with very advanced dementia. The documentary, 'There is a bridge', captures the well-known dementia expert, Naomi Feil, sharing a precious moment of communication and spiritual connection with a woman with advanced dementia, Gladys Wilson. An extract from the film is available on YouTube.

• 7. Carers and spirituality Open

  Spiritual beliefs are powerful influences on how families deal with serious illness. Carers too may need help to overcome fears and to find hope or meaning in life. It may help to find peace of mind if they can talk openly about their feelings and beliefs.

  Having well developed spiritual resources may help carers to find purpose and peace amid the losses that come with dementia. The human spirit has great capacity to find meaning amid tremendous hardships, losses and challenges. Carers often identify themselves as 'lucky' or 'blessed' simply because of the relationships in their lives or the privilege to have provided care, love and support to an ill loved one (Stuckey 2003).

  Carers and professional care staff may need to distinguish between their religious beliefs and their spiritual position, and those of the person they are caring for. It may raise challenging differences, or it may be a source of comfort for both the person with dementia and their carer.

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