Tackling the disadvantage experienced by people dying with dementia

Categories: Care.

Willow Wood Hospice was delighted to be presented with the Help the Hospices award for innovation in clinical practice in 2013 for our Dementia Service. It has encouraged us and supported us in further developments.

The service was started in July 2012 with the aim of bringing the skills of the hospice out to people with dementia approaching the end of life, wherever they were being cared for, reversing the disadvantage that they are known to face.

Service development 

As the service has developed, the criteria for referral have adapted to include people with dementia with distressing symptoms, not necessarily at the end of life, but in need of palliative interventions and to give opportunity for others who have retained capacity to make plans for their future care and state their preferences ahead of the time when their ability to do this could be lost.

Over the first two years there have been 169 referrals to the service. The response time has been an average 3.8 days. Referrals have been registered with 38 of the 42 GP practices in Tameside and Glossop, so there has been a good dissemination of the service throughout the area covered. Referrals have originated from many health and social care professionals (see chart above).

Many times professionals have felt overwhelmed by a patient’s problems before deciding that referral to the Hospice Dementia Service might lead to some hope of resolution. This has often posed difficult ethical problems, which have been addressed through Best Interest meetings, seeking to find a solution which reflects the patient’s best interests, but ensures support for family members.

Emerging themes 

Several themes have been uncovered in responding to the needs of those referred.

Some patients have unvoiced and untreated pain which is giving rise to distress, but behaviours generated are thought to be attributable to dementia. Treating this pain led to a reduction in behaviours such as resistance to personal care and aggression and irritability. When oral medication is refused, the use of transdermal analgesia in the patient’s best interests can often totally change the situation. As pain was relieved the non-cognitive symptoms of dementia, as assessed by the Neuropsychiatric Inventory, also decreased.

It has become clear that professionals involved with people dying with dementia too often put symptoms of distress down to dementia alone without looking for other reasons for distressed behaviour. People with advanced dementia are often unable to verbalise what is troubling them so may hit out or grab to get attention and try to express their needs.

Declining intake of food and fluid is a common problem as end of life approaches for those with advanced dementia. Food supplementation can ameliorate weight loss to a certain extent, but the main issue is the distress this causes to family and professional carers alike. Calm and sensitive explanation that these problems are associated with the approach of end of life and discussion of the risks vs possible benefits of artificial nutrition and hydration is usually needed and appreciated at this difficult time.

Repeated hospital admission due to infection or dehydration at the end of life is extremely distressing to people with dementia. Having conversations around advance care planning can help ensure only admissions that are necessary to promote comfort are carried out. Often family members appreciate that further admission will only aggravate an already distressing situation, but can feel guilty if they suggest this. Bringing such fears out into the open for discussion can be of benefit to the person dying with dementia and their loved ones.

A place in the spectrum of services

We have been pleased to find a role in teaching and reciprocal learning with colleagues in the community, the general hospital, care homes and the mental health service. There has been productive discussion with officers and commissioners of the CCG, the local authority and other organisation. Both nursing and medical students have spent time with the service and in some cases been inspired to further study into the field of dementia care at the end of life, with their dissertations/projects gaining attention within their universities. The specialist nurse has been invited to contribute to a series on dementia and end of life care for the Nursing Standard, she has also been invited to be the subject of a personal profile in the Nursing Times.

Willow Wood now hosts a bi-monthly forum for professionals working in any setting who are interested in providing better care for people with advancing dementia. New ideas and insights are emerging from this and will be explored as service innovations.

Presentations and publications

We are pleased to have had many opportunities to share our experiences and ideas:

  • Greater Manchester Demonstration Sites joint presentation December 2012
  • Help the Hospices Conference 2013- Hospice: A Palliative Care Dimension To Dementia, with Jacqueline Crowther and Siobhan Hortan, East Cheshire Hospice
  • Dementia Quality and Care: Manchester Conference Centre 25.2.14
  • Dementia Congress: Brighton 12.11.2014
  • Various presentations to Care Home staff, district nurses and hospice staff on end of life with dementia and the communication and perception changes that accompany this.


  • Tapley M, Regan A and Jolley D (2013) Hospice: putting the heart back into dementia care. Journal of Dementia Care 21 (5) 14-15
  • Regan A, Tapley M and Jolley D (2014) Dementia at the end of life: what can hospices do? European Journal of Palliative Care 21(1) 6-10)
  • Regan A, Tapley M and Jolley D (2014) Improving end of life care for people with dementia. Nursing Standard 28 (48) 37-43
  • Tapley, M. & Regan, A. (2014) The case study master class: making decisions regarding artificial hydration and nutrition in an older woman with advanced dementia. European Journal of Palliative Care : 21(4)]: 170-171
  • Cardoso A, Jolley D, Regan A and tapley M (2014) Dying with dementia: a challenge for palliative care now and in the future. Acta Medica Portuguesa 27: 414-416.

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