Food and Diet
Good food nicely presented regularly and often, cut up into small pieces is helpful. Dogged persistence is also important: it may take a while for carers to get the hang of dietary support. A number of carers have found some particular “secret weapons” e.g. Guava juice is high in calories and it doesn’t seem to be acidic. Thickened soups, peanut butter sandwiches and chocolate baby foods have all been found by some carers to be particularly helpful.
One particularly important point is to remember that people with advanced dementia too often seem to have days when they don’t particularly want to eat. Carers can be very worried about this, we often think that if someone does not eat three meals a day they are getting ill.
We have found that if the patient does not want to eat and cannot be encouraged to do so without conflict and stress, it is often the best to just leave them be. If they don’t eat one day they will often need a bit more the next day. Taking this approach may cause some trepidation because carers may feel the patient will die more quickly from poor nutrition. In fact, we have generally found it is not the case. Patients have lived a considerable length of time after this more relaxed approach has been taken.
The Compromised Swallowing Guide produced by the Peterborough Palliative Care in Dementia Group is now (August 2010) available. Because it is available via several sites, to find it, Google ‘Compromised swallowing a practical guide’. It is primarily produced for healthcare professionals but contains a lot of practical information which may be of help to carers of people with advanced dementia who have difficulty swallowing.
The Experience of One Carer
Mum’s appetite was always problematic and she lost lots of weight. Food became a huge issue between us. I equated food with life and I was watching her fade away. Enter the dietitian and the food supplement drinks, disgusting, but Mum had had them before so I was able to introduce them but she would only take them from me.
In September 07 Mum stopped eating and would never eat again. Reassured by the dietitian I was able to accept it but it was to become an issue again later, but not with me.
Mum was taken to A&E with a suspected stroke. She was dehydrated but became stable. Suddenly things changed, her blood pressure plummeted and her heart rate became even more erratic than usual. What we found out later is that she had had a small heart attack that didn’t register. The chest x-ray finally showed that she had pneumonia and wasn’t expected to survive. They asked about intervention and resuscitation. There was to be none. They said that they could try a pressure mask to ease her symptoms if she would be able to tolerate it. Basically though they were sending her to a ward to die.
My sister decided to cover the nights while I did the days. I would get there early so I could wash her and give her the medication which by this time was mostly liquid. I knew that with the amount of fluids Mum had to have during the day the nurses would have difficulty doing it or would not really have enough time to do it.
Mum’s not eating now become an issue again with some of the nurses.
One of the nurses took me aside and asked if I would mind if she got the ward dietitian to assess Mum. She still couldn’t quite get that Mum didn’t eat. I had no problem with calling the dietitian in but I was not about to let anything interfere with what was clearly working.
The dietitian who came was a breath of fresh air and although I didn’t know it at the time would become a great support. She looked over Mum and wasn’t at all worried about her fluid intake. Once she had seen Mum the nurses finally accepted it.
Just under three weeks after being admitted and being told that she was not going to survive Mum was home.
After a couple of weeks Mum couldn’t tolerate her drinks. The dietitian from the hospital, who was now in the community, called and she put Mum on some supplements and changed her drinks. The new regime worked and Mum gained weight and looked really healthy. The only problem was trying to get her to remain sitting long enough to give her fluids. It was such a struggle and overall it could not be solved.
By the beginning of September Mum had deteriorated. She wasn’t talking anymore and always had her eyes closed. I could still get her to take her medication and drinks but it had become an all day job to get the required amount into her.
After the horrendous experience at the hospital I now made the decision that Mum would stay at home until she passed away.
Perhaps the greatest spiritual need for patients is to feel loved and cared for by those whom they know and whom they value. Time spent sitting with a patient is important. It is essential to remember that a lack of response from the patient does not mean that what has been said or done has not been felt.
Many people who recover from episodes when they could not respond can recall and retell what was said and happened with surprising accuracy. We have seen patients very close to death suddenly show evidence that they are aware (perhaps by making a sign of the cross or saying prayers) and other patients suddenly come out with lucid comments at times when they were not thought to be aware or hearing.
The mere fact of being with someone having conversations with those around about day-to-day things is important and very positive for those with advanced dementia. Doing things at times of interaction is also important. Many people are not good at sitting doing and saying nothing. Feeding, personal care where possible and other activities are good things therefore for carers to do with their loved ones. Set prayers, reading from religious texts etc may be comforting. Specific prayers appropriate for those who are dying may also be helpful .
Support From Specialist Teams
We think that the complexities around the managing of complex and advanced dementia at home require a special approach. It is widely accepted that the Macmillan style approach of community teams supporting patients at home with cancer is right. Even though the components of care provided by Macmillan teams can normally be provided by others, it is well accepted that a specialist team does better.
We believe that the same applies for dementia care. The challenges of managing complex and advanced dementia at home are significantly different from cancer care but the principle that a specialist team should coordinate services and the professionals is completely valid. We hope very much that we will see the creation of such teams and research into their effectiveness in the near future. A professional who is known to the patient and carer, and who will visit and monitor proactively has been strongly identified as a requirement by our research. Reactive visiting by primary care and others at times of crisis is simply inadequate.
Dying in the Most Appropriate Place
If it can be done, the terminal care of dementia at home is a good idea. It appears to be for some, a better way for the patient. Dying people can continue to provide connection and love for those around them up to the moment of death. Perhaps at home with the family death is more human experience. Perhaps also bereavement for those left behind becomes a more gentle and better experience.
Terminal care of dementia at home is not suitable for all and should not be considered as the only way. Residential and nursing care is needed for many people and there are times during an illness when people will require a different sort of care. We believe that it requires specialist teams although at the present time many are having to do this without any support of a co-ordinated nature.