Accompanying people with dementia at the end of life

Accompanying people with dementia at the end of life

Dr Pia Matthews, a senior lecturer at St Mary’s University, explores accompanying dementia sufferers at the end of life.

Dr Pia Matthews, a senior lecturer at St Mary’s University, explores accompanying dementia sufferers at the end of life.

Living and dying well with dementia

Quite rightly people are talking more and more about living well with dementia. But we can’t ignore dementia and the toll it takes on people, their families and carers. Nevertheless we can remove the stigma associated with dementia, we can encourage ethical research and treatment, we can work to improve people’s lives so that they and their families do indeed live well.

Above all, we can recognise the contribution people with dementia make to those around them. In particular by entrusting themselves to the care of others and by living by the heart, people with dementia show that there is more to being human than independence, function, strength and efficiency.

Understanding dementia

Dementia is not a single disease; it’s an overall term — like heart disease — that covers a wide range of specific medical conditions, including Alzheimer’s disease. Disorders grouped under the general term ‘dementia’ are caused by abnormal brain changes. These changes trigger a decline in thinking skills, also known as cognitive abilities, severe enough to impair daily life and independent function. They also affect behaviour, feelings and relationships.

Accompanying those at the end of life

But the problem with a focus on living well with dementia often means that we are reluctant to talk about dying as if that takes away from living well. We forget about dying well with dementia. Accompanying people as they live well with dementia may at times be demanding. But accompanying people as they reach the end of life may seem even more challenging.

Dying well encourages us to think actively about our dying, discuss our wishes with our loved ones, become reconciled in our relationships, organise our affairs, and prepare well spiritually by prayer and the sacraments if we are religious. But often the person with late stage dementia becomes increasingly passive, less able to initiate things, and more and more dependent.

Preparation is key

For many families their loved one seems to slip away gradually as memory, responses and often communication change or cease altogether and the person turns inwards. It becomes difficult to judge if a person is nearing the end of life, and to see how a person with dementia can fully and actively engage with the dying process, and so prepare well.

Regardless of these difficulties the person with dementia can still live and die well with full human dignity. But in terms of offering support, their spirituality may be beyond our reach, though never beyond God’s, and accompanying them may prove complex.

Planning for end of life with dementia

The temptation for many people who have just received a diagnosis of dementia is to decide then and there that life is as good as over. Understandable concerns and fears of a bleak future may be overwhelming. Moreover, if a recently diagnosed person wants to plan for the end of their life by using strategies like advance directives, statements of wishes, or lasting powers of attorney, then they have to act while they still have sufficient mental capacity following the principles in the Mental Capacity Act.

None of these strategies necessarily mean that a person has given up on living well. Nevertheless entrenched attitudes and the stigma associated with dementia may distort how people think about their future.

What is an advance directive?

An advance directive lists treatments and procedures that the person does not want in specifically outlined circumstances, and this may include the refusal of life-prolonging treatments. A valid advance directive becomes binding when the person no longer has capacity to make decisions and the circumstances envisaged in the advance directive occur.

Of course the problem is that a person may make decisions without really knowing what is in store for them, after all it is hard to imagine how we will be or feel in an unknown future. Paradoxically some people seem contented in dementia and the strategies that enable people to live well with dementia mean that their greatest fears do not materialise.

Read more about advance care planning and advance directives.

The importance of a statement of wishes

Moreover an advance directive that specifies refusal of food and fluids may not allow for any discretion. In contrast statements of wishes seem to be more useful because they let other people involved in decision-making know about our values, hopes, and what matters to us such as what we would find too burdensome and where we would like to be cared for.

Fulfilling a dying person’s religious wishes

For instance, a religious person may state that they want their own minister to attend them as they near the end of life or that they would prefer to die at home if possible. These wishes are not legally binding but they are taken into account by the people who make decisions on the other’s behalf.

Lasting powers of attorney give the powers of decision making to someone the person trusts to act in their best interests. Both statements of wishes and lasting powers of attorney are particularly effective if the people involved know the person with dementia well and know what they like.

End of life care for people with dementia

End of life care for someone who seems to have retreated inside themselves can really be person-centred if their carers know them well. People with dementia often seem to live by the heart, and care that concentrates on the senses, providing the music they love, access to the spaces they enjoy such as gardens, flowers, or the sound of birdsong, scented candles, favourite TV programmes, prayers and hymns, all contribute to a supportive environment.

The Alzheimer’s Society has produced a useful leaflet called ‘This is me’ that acts as a record to help professional carers get to know a person’s likes and dislikes.

The principles are the same for good end of life care

Good end of life care for people with dementia follows the same principles as good care for everyone. The person with dementia is after all a person like all other persons and has the same human dignity as all other people. Certainly it is often the case that communication difficulties make it harder to diagnose pain or to work out what is troubling someone. A person’s behaviour be it passivity, inactivity, agitation or aggression may mask other problems such as unidentified pain or spiritual distress. Nevertheless everyone is entitled to appropriate specialist palliative care, pain relief and hospice care if this is indicated.

The importance of communication

Sometimes it seems difficult to provide the emotional and spiritual care people need at the end of life. We may not be able to share treasured memories; it is hard trying to be reconciled with someone who does not seem to know who you are or to let them know how much their life has meant to you.

But little things do make a difference even if you do not think the person knows or understands. So it is important to keep communication going and that includes being careful about tone of voice, and avoiding questions since often questions require the mental processing some people with dementia find impossible.

Just being at their side is very powerful

Doing things for and with people is important but, as many families and carers say, simply being with a person, holding their hand, are really significant signs of a comforting presence. Accompanying people by being there with touch or in silence or with prayer can be emotionally demanding yet very powerful, as anyone who has sat at the bedside of someone who is dying knows.

Helping to build trust

The stories of people who have accompanied loved ones with dementia allow us to see that it is possible to entrust ourselves to others who will not abandon us and who will hold our best interests in their hearts.

But as parishes and communities we also need to think about how we can help to build up trust and care so that people are already known to us long before they need support and when they do need help they know where to turn and that they are not alone.

Bereavement and dementia

One particular area where that community support is especially needed is in bereavement. When a person with dementia dies then a family carer may need support not only to reorient their lives after possibly years of caring, but also to deal with regrets and even guilt at feelings of relief.

However perhaps more difficult is how to support a person with dementia whose loved one has died, especially if that loved one was a husband or wife. This kind of situation is very complex and there is no one easy solution.

If the person is not told that their loved one has died out of the understandable motive not to cause upset, or in the belief that the person will not really notice, remember or understand, then there may be problems ahead.

Practical wisdom and honesty in end of life care

The person with dementia may feel abandoned when their loved one is no longer there or no longer visits. They may be confused about what is obviously missing. Even if the person with dementia does not seem to notice an absence, telling them at least once that their loved one has died gives them their own chance to grieve.

The news may take time to sink in and repeatedly telling a person may open up a new sense of grief each time. Practical wisdom helps here: the person may just need a lot of time to process what has happened.

The Art of Dying Well reminds us we are not alone

The Art of Dying Well reminds us that dying may seem like a mountain that each of us has to climb. However this mountain has been climbed before, and people have fallen where we also fall, but we are not alone. Other people have climbed this way, other people have supported them, and we can all learn from them. In this regard, living and dying with dementia is no different.

About the author

Pia Matthews is a senior lecturer at St Mary’s University Twickenham and the Director of Studies at St John’s Seminary, Wonersh, an institution affiliated to St Mary’s. She gained a BA/MA in Law from Cambridge University, a BTh (Theology) from St John’s Seminary and Surrey University, and an MA in Bioethics from St Mary’s. Her PhD doctorate explored the notion of the person in patristic theology and philosophy, applying insights from Trinitarian theology and Christology to contemporary issues concerning the person in bioethics.

Pia teaches on the MA Bioethics and Medical Law programme, and on the FD Healthcare Practitioners Ethics, Theology and Care at St Mary’s; in bioethics and in philosophy at St John’s Seminary; and in marriage and family life at Allen Hall Seminary Westminster. In 2015 Pia was appointed an expert to the XIV Ordinary General Assembly Synod of Bishops by Pope Francis.

She has also spoken at events organised by the Pontifical Council for Culture and the Pontifical Council for the Promotion of the New Evangelisation. She has represented the Catholic Bishops’ Conference of England and Wales at a conference organised by the Dicastery for Laity and Family Life in Rome. Pia is a member of CBET and InSpiRe.


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