Art & science | spiritual care
Meeting the religious needs of residents with dementia Being helped to follow lifelong faith practices can be a source of comfort to many people living with cognitive impairment. Patricia Higgins explains how staff can achieve this Correspondence [email protected] Patricia Higgins is Memory Service nurse specialist, Bromley Memory Service, Oxleas NHS Foundation Trust, Kent Date of submission June 13 2013 Date of acceptance September 11 2013 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines nop.rcnpublishing.com
Abstract This article considers practical strategies to help nurses working in care homes meet the religious needs of people with dementia, including attending services in homes or churches, supporting them in private prayer and at the end of life. It also considers the characteristics of person-centred care for such residents and how the Mental Capacity Act 2005 may be called on to support religious needs as dementia advances. To achieve good practice in all these aspects, staff in care homes should work in partnership with local faith communities and ensure they are aware of residents’ life histories and preferences, including their faith practices. The focus of the article is on meeting the needs of Christian residents. For residents from other faith groups living in care homes not affiliated to their faith, the same general approach to meeting religious needs could be adopted as a starting point. Keywords Care homes, Christianity, dementia, holistic care, religion, spiritual care THERE ARE more than 800,000 people with dementia in the UK, over 300,000 of whom live in care homes (Alzheimer’s Society 2013). Evidence suggests that 80 per cent of people living in care homes in the UK have dementia or a significant cognitive impairment (Alzheimer’s Society 2013). The 2011 Census (Nomis Official Labour Market Statistics 2013) showed that 80 per cent of people aged 65 and over in England and Wales were Christians and a further 4 per cent belonged to other faith groups, highlighting the importance of faith for this cohort. Despite this, spirituality as an essential part of holistic care
NURSING OLDER PEOPLE
is often overlooked. For people with dementia, maintaining a link or reconnecting with religion as part of care provision might increase their sense of wellbeing and help maintain personhood (Department of Health 2001, National Institute for Health and Care Excellence (NICE) 2006). The Care Quality Commission (2012), which regulates health and adult social care services in England, states that staff must respect people’s needs relating to religion or belief. Religious care is a component of spiritual care (NHS Scotland 2009), which is an integral part of health care. Ross (2010) noted the rising interest in spirituality in healthcare literature. Despite this, spiritual areas of care are often a low priority or ignored (Holloway et al 2011). Personal accounts of individuals with dementia, such as those by Christine Bryden (2005) and Robert Davis (1989), shed light on the importance of spirituality and religion for them. However, there has been little research on religion and dementia and most has been undertaken with people living with dementia in their own homes. For those in the early stages of dementia their faith can be a source of comfort and strength that helps them cope with the difficulties of living with dementia (Snyder 2003, Dalby et al 2012). Jolley et al (2010) found that for patients in the early stages of dementia who were attending a memory clinic there was no obvious reduction in spiritual awareness and the practices associated with their beliefs were important to them. Furthermore, Dalby et al (2012) found that being part of a faith community was important to people with dementia. This included going to church, but also being kept informed of news and activities relating to the faith community. In addition, the Alzheimer’s Society (2010) found that ability to November 2013 | Volume 25 | Number 9 25
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Art & science | spiritual care For those with lifelong faith, the symbols, rituals and religious routines associated with their faith can provide a thread of continuity practise faith or religion was one of the main qualityof-life indicators for people with dementia, some of whom lived in care homes. In their study of 113 people with dementia living in care homes, MacKinlay and Trevitt (2012) found that most of them had taken part in organised religion. Almost all had memories of early church attendance and it had been an accepted part of their lives. Furthermore, they still attended church services in the care homes, partly for the social aspect. Attending religious services was a meaningful experience for them and participating in familiar rituals together helped to provide a sense of community. MacKinlay and Trevitt (2012) reported that most participants prayed, some daily before going to sleep, while for others prayer was ‘a way of being’. Prayer provided hope in the anticipation of God’s response. Powers and Watson (2011) also found that people with dementia living in care homes prayed on a daily basis. Accounts of people with advanced dementia participating in acts of worship suggest that they have been beneficial (Kirkland and McIlveen 1999, Shamy 2003), although neither of these accounts was evaluated from the perspective of participants with dementia. Acts of worship designed for people with dementia share common features, for example, the full circle programme (Kirkland and McIlveen 1999) and the candlelight group (Higgins 2005) use a multisensory approach, religious music and follow the same format each week. For those with lifelong faith, the symbols, rituals and religious routines associated with their faith can provide a thread of continuity connecting the present to the whole of their life (Friedman 1995, Hide 2003). For people who may be experiencing uncertainty and confusion, faith could provide reassurance. Notably, there are reports of people with advanced dementia, who rarely or never spoke, joining in with a hymn or a prayer (Buckwalter 2003, Ramsay 2008).
Enabling residents to worship The following suggestions are made to help staff working in care homes consider how they can meet the religious needs of residents with dementia. They are based on the author’s experience (Higgins 2005) and in-depth discussions she has had with care home managers, religious ministers and other healthcare professionals. 26 November 2013 | Volume 25 | Number 9
This article is written from a Christian perspective. The author is a Christian and the discussions she undertook also considered the needs of those from a Christian background. Underpinning these suggestions is the need for care home staff to work in partnership with local faith communities and to have knowledge of residents’ life histories and preferences, including the faith practices that are important to them. Holding religious services in the care home Being able to attend a religious service is important for residents with dementia because it keeps them connected to their faith and helps them to feel part of their faith community (MacKinlay and Trevitt 2012). Religious services take place in many care homes and having links with a particular church makes services more likely to happen. For homes without such links, managers should be proactive and approach local churches for help. Developing links need not be difficult and is an important step in helping to meet residents’ religious needs. There might already be a visitor from a particular church who could be approached and may be willing to introduce the idea of holding services to the clergy on the home’s behalf. It is also possible that several members of one denomination live in the home, in which case contacting that church would seem a good place to start. Often, lack of knowledge of dementia and uncertainty about whether care homes would welcome them can result in clergy and lay visitors being reluctant to visit. Staff welcoming visitors from churches helps to put them at ease and foster links between churches and care homes. Establishing the act of worship as part of the home’s routine helps to ensure it takes place regularly. The simple action of writing it in the diary means that staff coming on duty are aware when they start their shift. It also ensures that residents who might wish to attend are not booked in for another appointment at the same time, such as with the hairdresser. This is also important for practical reasons, for example, space to hold the service might need to be prepared beforehand by rearranging chairs. Staff thinking services are important and recognising their value to those residents who wish to attend are other factors that can help with ongoing provision. Some staff may also wish to attend, for example, to receive Holy Communion where bread and wine are consecrated and shared. Publication of information in church newsletters about services when they are established increases links between care homes and the faith community. NURSING OLDER PEOPLE
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Parish members could perhaps attend services in care homes if they wished. Residents with dementia may become restless during a service, walking around or calling out. It is important to understand that such behaviour may be an attempt to communicate distress (James 2011). To help reduce its likelihood some staff should also attend the service to support those residents who require it. Importantly, staff should have a good knowledge of residents and how best to respond to their distress. For example, one care home manager described to the author how the simple act of holding the hand of a person who appeared distressed during the service offered them the comfort they needed. Residents with dementia might become more confused, resulting in distress, if they cannot make sense of what is going on. If possible the room should be prepared before residents are brought into it for the service. Playing church music will help them understand from the outset what is about to take place. Inviting relatives to attend services is another way to support residents to take part. They may have attended religious services together in the past and having relatives present could provide additional reassurance. The act of worshipping together could also be a positive experience for relatives. Determining the right length for the service is important. If it is too long some residents may become restless, but if it is too short it might be finished before all those attending have realised what is going on. A booklet such as Lighting the Way (Higgins and Allen 2007) could help because it sets out principles to be followed and practical considerations when planning services. A balance needs to be struck between managing residents’ distress and not disrupting the service for others. If residents are distressed and wish to leave they should be helped to do so. It is important to examine the reason for the distress to help understand the situation from their perspective (NICE 2006). This can help avoid unnecessary prescribing of antipsychotic medication. The approach used by the Bromley care home team (BCHT) might help with this. The BCHT has developed a care pathway tool – the Oxleas Dementia Care Tool (ODCT) – that aims to provide a structured process for care home staff to work through. The tool is informed by the NICE (2006) guideline, which advises that when focusing on non-cognitive symptoms in dementia and behaviour that challenges, a full assessment is carried out. This assessment should consider physical health, depression, possible undetected pain, side
effects of medication, individual biography, psychosocial factors and physical environmental factors. The ODCT systematically explores all of these factors by following a bus route, with different factors representing a single bus stop. Encouraging care home staff to follow a familiar sequence of bus stops helps ensure that the tool is user friendly.
Staff in care homes can enable residents to be part of the faith community by forming links with churches and supporting them to attend services
Attending services at the church Although acts of worship often take place in care homes, going to the service in the church provides increased opportunities to be part of faith communities. However, once people are resident in care homes, attending church is often not considered for them, which means that they are forgotten and cut off. There are various difficulties to be overcome so that residents can attend church, such as transport arrangements and not enough staff to escort them if required. Friends or family members might also be able to accompany residents. The risks of the outing should be considered such as the risk of falls as a result of getting in and out of cars and the person’s frailty. Other issues such as incontinence and the possibility of challenging behaviour affect the likelihood of attendance. Again, strong links between churches and care homes may help overcome these issues. For example, the author knows of one Baptist home where a church minibus takes residents to services. Private prayer Powers and Watson (2011) and MacKinlay and Trevitt (2012) found that residents with dementia prayed every day. Meeting residents’ November 2013 | Volume 25 | Number 9 27
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Art & science | spiritual care needs to attend religious services can be easy to address, however, supporting them in private prayer poses more of a challenge. People might require support with private prayer at any time of the day or night, but staff might not know what those needs are as they are personal. Information about residents’ religious needs should be gathered on admission to help address this, preferably from the person him or herself but if necessary from family members. Care homes can then ensure that items such as daily devotional readings are available for those who would like them. Any other items such as rosaries, crucifixes or Bibles could also be provided if required. One care home manager described to the author how a member of staff was sitting with a confused resident with the Bible open. The resident, although she had little speech, told the staff member that Jesus loved her. This was perhaps a way for the resident to show her appreciation and affirm her faith. It was also a moving experience for the staff member. Another example was a man who was described as being confused and often aggressive and angry. When he was asked to say grace before a meal he found the words to pray using a range of vocabulary not apparent at other times. These anecdotes highlight that people’s ability to engage with their faith, even as dementia advances, should never be underestimated. Once again, having good links with local churches and church visitors who can spend time getting to know residents and understanding their prayer life can help. Church visitors or ministers might pray with residents and, as dementia progresses, will be familiar with how they like to pray and help them maintain this practice. The well-publicised case of community nurse Caroline Petrie who was suspended for offering to pray for a patient’s recovery (BBC News 2009) may have discouraged other nurses from offering prayers. It is important to note, however, that the act of praying for people is not the potential problem because this can be done privately. However, telling people that you are doing so might cause offence. In addition, the possibility of proselytising, particularly to vulnerable patients such as those with dementia, might be a cause for concern.
Care homes can ensure that items such as daily devotional readings are available for those who would like them 28 November 2013 | Volume 25 | Number 9
The RCN (2011) guidance on spirituality states that spiritual care is not about nurses imposing their own beliefs and values on others. Furthermore, nurses should be guided by their code of conduct (Nursing and Midwifery Council 2008), which requires them to uphold the reputation of the profession. End of life Supporting people with dementia at the end of life includes meeting their religious needs. This should be planned, if possible, and with relatives where necessary. An example from a care home was staff members who took it in turns to read passages from a resident’s Bible at her bedside and were happy that she died peacefully in the home. The manager had spoken to staff beforehand so that only those who were comfortable doing so participated in the reading. In another example, the author heard an account describing how the rosary had been said with the family at the bedside of a resident and at the end the person made the sign of the cross and died that night. Provision of such support at the end of life is also beneficial for relatives and may help them cope with the bereavement.
Person-centred care Residents with dementia try to cope with their situation by finding ways to reaffirm their identity (Clare et al 2008, Thein et al 2011). For people whose faith is important to them, this will be a central component of their identity. Person-centred care for such people involves recognition of the significance of God in their lives and seeks ways to sustain their relationship with God. This will help maintain their personhood and enhance their wellbeing. However, to deliver this aspect of care staff need to find out about an individual’s relationship with God and how this relationship can be sustained. The first step is a discussion with the person or a relative if necessary. To deliver person-centred care it is necessary to have an understanding of the person’s life history and personal preferences. MacKinlay and Trevitt (2012) report that while some participants in their study attended only their own denomination’s service, others were keen to attend any church service that was taking place. However, it is important to be aware that religion can be detrimental to the wellbeing of some people, for example, if they are unable to reconcile adverse events in their lives with their expectations of God (Stuckey 2001). NURSING OLDER PEOPLE
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Best interests As dementia advances the Mental Capacity Act 2005 may need to be used to address religious needs. One of the main principles of the act is that any act done for, or any decision made on behalf of, a person who lacks capacity must be done, or made, in the person’s best interests. Guidance on what the act means by ‘best interests’ is provided in a code of practice (Department for Constitutional Affairs 2007). If people have advanced dementia and are no longer able to communicate their wishes but are known to have a lifelong faith, it would seem to be in their best interests to support them in maintaining their link with that faith. Treloar (2011) suggested that religious care should be provided in people’s best interests in such situations and therefore there is a duty of care to provide this.
Conclusion For religious care to be most effective, care homes and churches should work together. This process is easier if care homes are affiliated to particular
denominations or churches. However, if homes are not part of church organisations, which is usually the case, it is more of a challenge. Homes and churches must commit to work together to support residents’ religious needs. Although this is a joint venture someone needs to make the first move and care homes should be proactive. Managers are important figures in the provision of religious care and if they have a faith it may be more likely that they will strive to address residents’ religious needs. The focus of this article has been on meeting the religious needs of Christians. For residents from other faith groups living in care homes not affiliated to their faith, the same general approach to meeting religious needs could be adopted as a starting point. This would involve first discussing faith practices with the individual and relatives, and then making links with the faith community. In many care homes religious services do take place and links have been established with local churches, but for those where they do not, and have not, perhaps it is time to make the first move.
Online archive For related information, visit our online archive and search using the keywords Conflict of interest None declared Acknowledgement I would like to acknowledge the support of a research scholarship from the Florence Nightingale Foundation, which funded my studies
References Alzheimer’s Society (2010) My Name is Not Dementia. Alzheimer’s Society, London. Alzheimer’s Society (2013) Low Expectations: Attitudes on Choice, Care and Community for People with Dementia in Care Homes. Alzheimer’s Society, London. BBC News (2009) Nurse Suspended For Prayer Offer. tinyurl.com/bmty6v (Last accessed: October 1 2013.) Bryden C (2005) Dancing with Dementia. Jessica Kingsley, London. Buckwalter G (2003) Addressing the spiritual and religious needs of persons with profound memory loss. Home Healthcare Nurse. 21, 1, 20-24.
Department for Constitutional Affairs (2007) Mental Capacity Act 2005 Code of Practice. tinyurl.com/cruhez8 (Last accessed: October 2 2013.) Department of Health (2001) National Service Framework for Older People. DH, London. Friedman D (1995) An anchor amidst anomie: ritual and aging. In Kimble M, McFadden S (Eds) Aging, Spirituality, and Religion. A Handbook, Volume 2. Fortress Press, Minneapolis MN.
Higgins P (2005) Bringing spiritual light into dementia care. Journal of Dementia Care. 13, 2, 10-11.
National Institute for Health and Care Excellence (2006) Dementia: Supporting People with Dementia and their Carers in Health and Social Care. Clinical guideline 42. NICE, London.
Clare L, Rowlands J, Bruce E et al (2008) The experience of living with dementia in residential care: an interpretative phenomenological analysis. The Gerontologist. 48, 6, 711-720.
Holloway M, Adamson S, McSherry W et al (2011) Spiritual Care at the End of Life: A Systematic Review of the Literature. tinyurl. com/p957k7f (Last accessed: September 30 2013.)
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MacKinlay E, Trevitt C (2012) Finding Meaning in the Experience of Dementia. Jessica Kingsley, London. NHS Scotland (2009) Spiritual Care and Chaplaincy. Scottish Government, Edinburgh.
Higgins P, Allen R (2007) Lighting the Way: Spiritual and Religious Care for Those With Dementia. The Leveson Centre, Solihull.
Davis R (1989) My Journey into Alzheimer’s Disease. Tyndale House Publishers, Wheaton Il.
Kirkland K, McIlveen H (1999) Full circle: spiritual therapy for people with dementia. American Journal of Alzheimer’s Disease and Other Dementias. 14, 4, 245-247.
Hide K (2003) Symbol ritual and dementia. Journal of Religious Gerontology. 13, 3-4, 77-90.
Care Quality Commission (2012) What Standards You Have a Right to Expect from the Regulation of Your Care Home. CQC, London.
Dalby P, Sperlinger D, Boddington S (2012) The lived experience of spirituality and dementia in older people living with mild to moderate dementia. Dementia. 11, 1, 75-94.
Jolley D, Benbow S, Grizzell M et al (2010) Spirituality and faith in dementia. Dementia. 9, 3, 311-325.
James I (2011) Understanding Behaviour in Dementia That Challenges. A Guide to Assessment and Treatment. Jessica Kingsley, London.
Nomis Official Labour Market Statistics (2013) Age by Religion. tinyurl.com/oagcyh8 (Last accessed: October 7 2013.) Nursing and Midwifery Council (2008) The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives. NMC, London. Powers B, Watson N (2011) Spiritual nurturance and support for nursing home residents with dementia. Dementia. 10, 1, 59-80.
Ross L (2010) Why the increasing interest in spirituality within healthcare? In McSherry W, Ross L (Eds) Spiritual Assessment in Healthcare Practice. M&K Publishing, Cumbria. Royal College of Nursing (2011) Spirituality in Nursing Care: A Pocket Guide. RCN, London. Shamy E (2003) Worship for people with Alzheimer’s disease and related dementias. In A Guide to the Spiritual Dimension of Care for People with Alzheimer’s Disease and Related Dementia. Jessica Kingsley, London. Snyder L (2003) Satisfactions and challenges in spiritual faith and practice for persons with dementia. Dementia. 2, 3, 299-313. Stuckey J (2001) Blessed assurance: the role of religion and spirituality in Alzheimer’s disease caregiving and other significant life events. Journal of Aging Studies. 15, 1, 69-84. Thein N-W, D’Souza G, Sheehan B (2011) Expectations and experience of moving to a care home: perceptions of older people with dementia. Dementia. 10, 1, 7-18. Treloar A (2011) Do I have a duty to arrange for my patients to receive communion and sacraments for the dying? Catholic Medical Quarterly. 61, 3, 36-37.
Ramsay J (2008) Spiritual care when dementia is present: holding fast to the memory of God. The Clergy Journal. 84, 1, 9-11.
November 2013 | Volume 25 | Number 9 29
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Meeting the religious needs of residents with dementia Being helped to follow lifelong faith practices can be a source of comfort to many people living with cognitive impairment. Patricia Higgins explains how staff can achieve this Correspondence [email protected] Patricia Higgins is Memory Service nurse specialist, Bromley Memory Service, Oxleas NHS Foundation Trust, Kent Date of submission June 13 2013 Date of acceptance September 11 2013 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines nop.rcnpublishing.com
Abstract This article considers practical strategies to help nurses working in care homes meet the religious needs of people with dementia, including attending services in homes or churches, supporting them in private prayer and at the end of life. It also considers the characteristics of person-centred care for such residents and how the Mental Capacity Act 2005 may be called on to support religious needs as dementia advances. To achieve good practice in all these aspects, staff in care homes should work in partnership with local faith communities and ensure they are aware of residents’ life histories and preferences, including their faith practices. The focus of the article is on meeting the needs of Christian residents. For residents from other faith groups living in care homes not affiliated to their faith, the same general approach to meeting religious needs could be adopted as a starting point. Keywords Care homes, Christianity, dementia, holistic care, religion, spiritual care THERE ARE more than 800,000 people with dementia in the UK, over 300,000 of whom live in care homes (Alzheimer’s Society 2013). Evidence suggests that 80 per cent of people living in care homes in the UK have dementia or a significant cognitive impairment (Alzheimer’s Society 2013). The 2011 Census (Nomis Official Labour Market Statistics 2013) showed that 80 per cent of people aged 65 and over in England and Wales were Christians and a further 4 per cent belonged to other faith groups, highlighting the importance of faith for this cohort. Despite this, spirituality as an essential part of holistic care
NURSING OLDER PEOPLE
is often overlooked. For people with dementia, maintaining a link or reconnecting with religion as part of care provision might increase their sense of wellbeing and help maintain personhood (Department of Health 2001, National Institute for Health and Care Excellence (NICE) 2006). The Care Quality Commission (2012), which regulates health and adult social care services in England, states that staff must respect people’s needs relating to religion or belief. Religious care is a component of spiritual care (NHS Scotland 2009), which is an integral part of health care. Ross (2010) noted the rising interest in spirituality in healthcare literature. Despite this, spiritual areas of care are often a low priority or ignored (Holloway et al 2011). Personal accounts of individuals with dementia, such as those by Christine Bryden (2005) and Robert Davis (1989), shed light on the importance of spirituality and religion for them. However, there has been little research on religion and dementia and most has been undertaken with people living with dementia in their own homes. For those in the early stages of dementia their faith can be a source of comfort and strength that helps them cope with the difficulties of living with dementia (Snyder 2003, Dalby et al 2012). Jolley et al (2010) found that for patients in the early stages of dementia who were attending a memory clinic there was no obvious reduction in spiritual awareness and the practices associated with their beliefs were important to them. Furthermore, Dalby et al (2012) found that being part of a faith community was important to people with dementia. This included going to church, but also being kept informed of news and activities relating to the faith community. In addition, the Alzheimer’s Society (2010) found that ability to November 2013 | Volume 25 | Number 9 25
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Art & science | spiritual care For those with lifelong faith, the symbols, rituals and religious routines associated with their faith can provide a thread of continuity practise faith or religion was one of the main qualityof-life indicators for people with dementia, some of whom lived in care homes. In their study of 113 people with dementia living in care homes, MacKinlay and Trevitt (2012) found that most of them had taken part in organised religion. Almost all had memories of early church attendance and it had been an accepted part of their lives. Furthermore, they still attended church services in the care homes, partly for the social aspect. Attending religious services was a meaningful experience for them and participating in familiar rituals together helped to provide a sense of community. MacKinlay and Trevitt (2012) reported that most participants prayed, some daily before going to sleep, while for others prayer was ‘a way of being’. Prayer provided hope in the anticipation of God’s response. Powers and Watson (2011) also found that people with dementia living in care homes prayed on a daily basis. Accounts of people with advanced dementia participating in acts of worship suggest that they have been beneficial (Kirkland and McIlveen 1999, Shamy 2003), although neither of these accounts was evaluated from the perspective of participants with dementia. Acts of worship designed for people with dementia share common features, for example, the full circle programme (Kirkland and McIlveen 1999) and the candlelight group (Higgins 2005) use a multisensory approach, religious music and follow the same format each week. For those with lifelong faith, the symbols, rituals and religious routines associated with their faith can provide a thread of continuity connecting the present to the whole of their life (Friedman 1995, Hide 2003). For people who may be experiencing uncertainty and confusion, faith could provide reassurance. Notably, there are reports of people with advanced dementia, who rarely or never spoke, joining in with a hymn or a prayer (Buckwalter 2003, Ramsay 2008).
Enabling residents to worship The following suggestions are made to help staff working in care homes consider how they can meet the religious needs of residents with dementia. They are based on the author’s experience (Higgins 2005) and in-depth discussions she has had with care home managers, religious ministers and other healthcare professionals. 26 November 2013 | Volume 25 | Number 9
This article is written from a Christian perspective. The author is a Christian and the discussions she undertook also considered the needs of those from a Christian background. Underpinning these suggestions is the need for care home staff to work in partnership with local faith communities and to have knowledge of residents’ life histories and preferences, including the faith practices that are important to them. Holding religious services in the care home Being able to attend a religious service is important for residents with dementia because it keeps them connected to their faith and helps them to feel part of their faith community (MacKinlay and Trevitt 2012). Religious services take place in many care homes and having links with a particular church makes services more likely to happen. For homes without such links, managers should be proactive and approach local churches for help. Developing links need not be difficult and is an important step in helping to meet residents’ religious needs. There might already be a visitor from a particular church who could be approached and may be willing to introduce the idea of holding services to the clergy on the home’s behalf. It is also possible that several members of one denomination live in the home, in which case contacting that church would seem a good place to start. Often, lack of knowledge of dementia and uncertainty about whether care homes would welcome them can result in clergy and lay visitors being reluctant to visit. Staff welcoming visitors from churches helps to put them at ease and foster links between churches and care homes. Establishing the act of worship as part of the home’s routine helps to ensure it takes place regularly. The simple action of writing it in the diary means that staff coming on duty are aware when they start their shift. It also ensures that residents who might wish to attend are not booked in for another appointment at the same time, such as with the hairdresser. This is also important for practical reasons, for example, space to hold the service might need to be prepared beforehand by rearranging chairs. Staff thinking services are important and recognising their value to those residents who wish to attend are other factors that can help with ongoing provision. Some staff may also wish to attend, for example, to receive Holy Communion where bread and wine are consecrated and shared. Publication of information in church newsletters about services when they are established increases links between care homes and the faith community. NURSING OLDER PEOPLE
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Parish members could perhaps attend services in care homes if they wished. Residents with dementia may become restless during a service, walking around or calling out. It is important to understand that such behaviour may be an attempt to communicate distress (James 2011). To help reduce its likelihood some staff should also attend the service to support those residents who require it. Importantly, staff should have a good knowledge of residents and how best to respond to their distress. For example, one care home manager described to the author how the simple act of holding the hand of a person who appeared distressed during the service offered them the comfort they needed. Residents with dementia might become more confused, resulting in distress, if they cannot make sense of what is going on. If possible the room should be prepared before residents are brought into it for the service. Playing church music will help them understand from the outset what is about to take place. Inviting relatives to attend services is another way to support residents to take part. They may have attended religious services together in the past and having relatives present could provide additional reassurance. The act of worshipping together could also be a positive experience for relatives. Determining the right length for the service is important. If it is too long some residents may become restless, but if it is too short it might be finished before all those attending have realised what is going on. A booklet such as Lighting the Way (Higgins and Allen 2007) could help because it sets out principles to be followed and practical considerations when planning services. A balance needs to be struck between managing residents’ distress and not disrupting the service for others. If residents are distressed and wish to leave they should be helped to do so. It is important to examine the reason for the distress to help understand the situation from their perspective (NICE 2006). This can help avoid unnecessary prescribing of antipsychotic medication. The approach used by the Bromley care home team (BCHT) might help with this. The BCHT has developed a care pathway tool – the Oxleas Dementia Care Tool (ODCT) – that aims to provide a structured process for care home staff to work through. The tool is informed by the NICE (2006) guideline, which advises that when focusing on non-cognitive symptoms in dementia and behaviour that challenges, a full assessment is carried out. This assessment should consider physical health, depression, possible undetected pain, side
effects of medication, individual biography, psychosocial factors and physical environmental factors. The ODCT systematically explores all of these factors by following a bus route, with different factors representing a single bus stop. Encouraging care home staff to follow a familiar sequence of bus stops helps ensure that the tool is user friendly.
Staff in care homes can enable residents to be part of the faith community by forming links with churches and supporting them to attend services
Attending services at the church Although acts of worship often take place in care homes, going to the service in the church provides increased opportunities to be part of faith communities. However, once people are resident in care homes, attending church is often not considered for them, which means that they are forgotten and cut off. There are various difficulties to be overcome so that residents can attend church, such as transport arrangements and not enough staff to escort them if required. Friends or family members might also be able to accompany residents. The risks of the outing should be considered such as the risk of falls as a result of getting in and out of cars and the person’s frailty. Other issues such as incontinence and the possibility of challenging behaviour affect the likelihood of attendance. Again, strong links between churches and care homes may help overcome these issues. For example, the author knows of one Baptist home where a church minibus takes residents to services. Private prayer Powers and Watson (2011) and MacKinlay and Trevitt (2012) found that residents with dementia prayed every day. Meeting residents’ November 2013 | Volume 25 | Number 9 27
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Art & science | spiritual care needs to attend religious services can be easy to address, however, supporting them in private prayer poses more of a challenge. People might require support with private prayer at any time of the day or night, but staff might not know what those needs are as they are personal. Information about residents’ religious needs should be gathered on admission to help address this, preferably from the person him or herself but if necessary from family members. Care homes can then ensure that items such as daily devotional readings are available for those who would like them. Any other items such as rosaries, crucifixes or Bibles could also be provided if required. One care home manager described to the author how a member of staff was sitting with a confused resident with the Bible open. The resident, although she had little speech, told the staff member that Jesus loved her. This was perhaps a way for the resident to show her appreciation and affirm her faith. It was also a moving experience for the staff member. Another example was a man who was described as being confused and often aggressive and angry. When he was asked to say grace before a meal he found the words to pray using a range of vocabulary not apparent at other times. These anecdotes highlight that people’s ability to engage with their faith, even as dementia advances, should never be underestimated. Once again, having good links with local churches and church visitors who can spend time getting to know residents and understanding their prayer life can help. Church visitors or ministers might pray with residents and, as dementia progresses, will be familiar with how they like to pray and help them maintain this practice. The well-publicised case of community nurse Caroline Petrie who was suspended for offering to pray for a patient’s recovery (BBC News 2009) may have discouraged other nurses from offering prayers. It is important to note, however, that the act of praying for people is not the potential problem because this can be done privately. However, telling people that you are doing so might cause offence. In addition, the possibility of proselytising, particularly to vulnerable patients such as those with dementia, might be a cause for concern.
Care homes can ensure that items such as daily devotional readings are available for those who would like them 28 November 2013 | Volume 25 | Number 9
The RCN (2011) guidance on spirituality states that spiritual care is not about nurses imposing their own beliefs and values on others. Furthermore, nurses should be guided by their code of conduct (Nursing and Midwifery Council 2008), which requires them to uphold the reputation of the profession. End of life Supporting people with dementia at the end of life includes meeting their religious needs. This should be planned, if possible, and with relatives where necessary. An example from a care home was staff members who took it in turns to read passages from a resident’s Bible at her bedside and were happy that she died peacefully in the home. The manager had spoken to staff beforehand so that only those who were comfortable doing so participated in the reading. In another example, the author heard an account describing how the rosary had been said with the family at the bedside of a resident and at the end the person made the sign of the cross and died that night. Provision of such support at the end of life is also beneficial for relatives and may help them cope with the bereavement.
Person-centred care Residents with dementia try to cope with their situation by finding ways to reaffirm their identity (Clare et al 2008, Thein et al 2011). For people whose faith is important to them, this will be a central component of their identity. Person-centred care for such people involves recognition of the significance of God in their lives and seeks ways to sustain their relationship with God. This will help maintain their personhood and enhance their wellbeing. However, to deliver this aspect of care staff need to find out about an individual’s relationship with God and how this relationship can be sustained. The first step is a discussion with the person or a relative if necessary. To deliver person-centred care it is necessary to have an understanding of the person’s life history and personal preferences. MacKinlay and Trevitt (2012) report that while some participants in their study attended only their own denomination’s service, others were keen to attend any church service that was taking place. However, it is important to be aware that religion can be detrimental to the wellbeing of some people, for example, if they are unable to reconcile adverse events in their lives with their expectations of God (Stuckey 2001). NURSING OLDER PEOPLE
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Best interests As dementia advances the Mental Capacity Act 2005 may need to be used to address religious needs. One of the main principles of the act is that any act done for, or any decision made on behalf of, a person who lacks capacity must be done, or made, in the person’s best interests. Guidance on what the act means by ‘best interests’ is provided in a code of practice (Department for Constitutional Affairs 2007). If people have advanced dementia and are no longer able to communicate their wishes but are known to have a lifelong faith, it would seem to be in their best interests to support them in maintaining their link with that faith. Treloar (2011) suggested that religious care should be provided in people’s best interests in such situations and therefore there is a duty of care to provide this.
Conclusion For religious care to be most effective, care homes and churches should work together. This process is easier if care homes are affiliated to particular
denominations or churches. However, if homes are not part of church organisations, which is usually the case, it is more of a challenge. Homes and churches must commit to work together to support residents’ religious needs. Although this is a joint venture someone needs to make the first move and care homes should be proactive. Managers are important figures in the provision of religious care and if they have a faith it may be more likely that they will strive to address residents’ religious needs. The focus of this article has been on meeting the religious needs of Christians. For residents from other faith groups living in care homes not affiliated to their faith, the same general approach to meeting religious needs could be adopted as a starting point. This would involve first discussing faith practices with the individual and relatives, and then making links with the faith community. In many care homes religious services do take place and links have been established with local churches, but for those where they do not, and have not, perhaps it is time to make the first move.
Online archive For related information, visit our online archive and search using the keywords Conflict of interest None declared Acknowledgement I would like to acknowledge the support of a research scholarship from the Florence Nightingale Foundation, which funded my studies
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