Top Tips from Barbara Pointon

Barbara Pointon cared for her husband Malcolm, and the film ‘Love’s Farewell’ shares their journey together.  Barbara died with dementia herself in 2020, living in a lovely care home which had followed the Butterfly Approach.

These ideas are drawn from what worked best for Malcolm and her, and therefore are not necessarily right for everyone.

1. It is the most trustful thing in the world to open your mouth to be fed.  Malcolm would refuse food from a new carer, so continuity of staff is vital.  Up to an hour may be required to patiently feed pureed food by the teaspoonful; cold thickened drinks may be more easily sensed and controlled than tepid ones.  A swallowing assessment will help with this.  Use metal not plastic spoons in case they bite down.
2. 84% of people with Alzheimer’s disease have visuo-spatial problems and don’t know where they are in space.   Rolling a resistive patient on a bed to change an incontinence pad can be traumatic for some – we used a standing hoist right to the end.  Each person will be different in this.  The change of position also helped Malcolm to cough productively.  A mobile placed on the ceiling helps to give some sense of position.
3. Weight loss in severe dementia is inevitable.  Relatives of care home residents need to understand that this is not usually a sign of neglect.
4. All of Malcolm’s medication had to be reduced to paediatric-sized dosages/preparations in line with weight loss and/or severity of dementia.  Even Malcolm’s final syringe-driver had only a half-dose in it.  This is very individual.
5. Loss of mobility should not mean confined to bed.  Alternate with a recliner chair and wheelchair.  Good pressure relief, the right size and absorbency of incontinence pads, scrupulous cleansing and six major changes of position each day ensured that Malcolm’s skin remained intact.
6. It is not your normal constipation; the brain no longer understands signals from the gut to co-ordinate muscles for consciously bearing down.  An assessment by a dementia-aware continence advisor can help as can a specific regimen, similar to that of a paraplegic person.
7. Even if the patient is mute and may have little understanding or speech, continue to talk to them.  The sound of a kindly voice is a fundamental human need.  Music (of their taste) will, almost always, still get through.
8. With normal levels of cognition shot to pieces, sensory and emotional needs become more important.  Stimulate each of the five sense in an appropriate way – Malcolm loved his aromatherapy sessions – and encourage eye-contact, talking and gentle touch, especially from visitors who are unsure what to do.
9. Most people with dementia become terrified of being anywhere other than familiar surroundings.  Breaks for the carer should be arranged through having replacement care at home, preferably given by the same person each time.  For the same reason, at the very end of life, admission to a noisy, busy hospital should be avoided if possible.  A calm and tranquil environment is important.
10. At any stage, time is the greatest gift you can give to people with dementia.  Make time to just BE with them as a comforting presence, especially when their lives are drawing to a close.

Barbara Pointon (2008)

Taken from ‘Out of the Shadows: End of life care for people with dementia’, The National Council for Palliative Care, 2009