Dementia care in NI, what is there?

elliemoo

I am trying to figure what help there is and how to access it for end of life dementia care in NI.

I am not talking about residential/nursing home care, rather caring for someone in their own home who is in the final stages of dementia.

I know we have services for other terminally ill people like, Macmillian, Hospice, Marie Curie etc but will these services help with end of life care for dementia sufferers?

We have a family social worker and a care package in place but it is now getting to the stage were the type of care provided is not what is really needed ie we don't need help with feeding anymore because the person is not eating. We have got the GP to prescribe a pain killing patch to aid any pain relief, but to be honest the GP just says there is nothing more he can do, it is just a matter of time. We accept that but can we get other help to ease things even just sitting with the person so they are not alone.

Just wondered what the experience is NI with dealing with this type of end of life care.

ohreally

Didn't want to read and run. I'm not in NI but can you get access to palliative care services in your local hospital (for advice).

This may also provide some pointers http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=428

elliemoo

ohreally wrote: »

Didn't want to read and run. I'm not in NI but can you get access to palliative care services in your local hospital (for advice).

This may also provide some pointers http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=428

Thanks for your reply. I have contacted alzheimers.org locally but they were not that useful. I am sure there is palliative care available through the local hospital but need to find the access point. We do have the district nurses involved so I am going to speak to them about how we can access more help.

ohreally

Do you have a senior social care worker/ social worker that you can call on?

ladeeda

Quite shocking that between your social worker, Alzhiemer's Society and your GP you have been given no advice on how end of life palliative care is obtained. Palliative care is no longer determined by diagnosis but by need, so should be available to all. Unfortunately less than 40% of people in your relatives position are offered or given any palliative care.

The first point of call is usually your district nurse. Speak to him or her. You may have to stand your ground, explain that you are aware that this service exits and you want it. Read these and make sure you tell the DN, the social worker and the GP that you have done. If no further help is given, see your local MP.

http://www.pallcareni.net/informationsupport/wherecaniaccessservices

http://www.dhsspsni.gov.uk/8555_palliative_final.pdf

It's a hard enough time, I know. Caring for anybody at end of life is difficult on a practical and emotional level, without the added stress of having to go searching for additional services.

Hopefully you will get some support soon.

elliemoo

ladeeda wrote: »

Quite shocking that between your social worker, Alzhiemer's Society and your GP you have been given no advice on how end of life palliative care is obtained. Palliative care is no longer determined by diagnosis but by need, so should be available to all. Unfortunately less than 40% of people in your relatives position are offered or given any palliative care.

The first point of call is usually your district nurse. Speak to him or her. You may have to stand your ground, explain that you are aware that this service exits and you want it. Read these and make sure you tell the DN, the social worker and the GP that you have done. If no further help is given, see your local MP.

http://www.pallcareni.net/informationsupport/wherecaniaccessservices

http://www.dhsspsni.gov.uk/8555_palliative_final.pdf

It's a hard enough time, I know. Caring for anybody at end of life is difficult on a practical and emotional level, without the added stress of having to go searching for additional services.

Hopefully you will get some support soon.

Thanks very much, most helpful.

We do have a social worker and the DN are involved but I know we are now at a point where we need extra help. I will be discussing with the DN first thing Tuesday morning and thanks to you I have the relevant information to hand.

travellinglight_2

Dementia centre ni may help with info? They are linked with Stirling university and have been in NI for some years. I know hospice was involved in a course on palliative care at the dementia centre ni which I attended so do ask DN about hospice care or contact them yourself? Xx

elliemoo

Thanks for the replies. Things sort of deteriorated over the weekend, typical for a bank holiday, but on-call doc was excellent and organised immediate nursing help as drip etc was needed. Since then have contacted social worker and DN team and marie curie have been coming at night but only as a short term measure.

We are now in a position where it is a matter of time but GP will reassess situation tomorrow and I will see where we go from there.

I have to say I have had a lot of excellent help this week but to be honest I have had to push for it and state that I am aware that there is help available. The system just seems so disjointed and there is no central point to work from/with, but this could just be our own personal experience and others have found it different. The care and help we are getting this week is really good but it seems you have to get to a real crisis before you can reach the help.

butterflymum

Just wanted to say, throughout this difficult time and with the added stress of having to push for additional help, don't forget to look after yourself too. It is very easy to become so immersed in the situation, that you neglect yourself and are then fit to help no one, least of all your loved one. Take care and trusting things all work out as well as they can do under the circumstances.

Has the Liverpool Care Pathway been mentioned? If not, and it is at some point, do ask for a leaflet/information explaining it, as unfortunately the health professionals can sometimes 'skim over' this and the actual reality of how it pans out, can come as a bit of a shock to relatives who have not had it properly explained.