end of life care for people with dementia

Discussion in 'Dementia-related news and campaigns' started by Samantha, Jan 20, 2005.

  1. Samantha

    Samantha Registered User

    Jan 19, 2005
    As part of the Society’s work on improving the quality of dementia care, I am starting work looking at end of life care for people with dementia. I want to explore the current standard of care and look at how it can be improved, so that everyone with dementia is provided with good end of life care and their carers and families are supported throughout.

    To help me understand what the Society needs to be calling for in terms of good practice and to help stamp out bad practice, I would be very grateful if anyone who felt they would like to share their thoughts, knowledge and experience could get in touch. I know it’s a tall order to ask people to share experiences of such a sad time with someone they don’t know, but all correspondence, written or verbal, will be treated with the utmost sensitivity and respect.

    If you feel you would like to share your thoughts and experiences please either reply to this post, send me a private message or get in touch with me at National Office on 020 7306 0865 or Gordon House, 10 Greencoat Place, London, SW1P 1PH.
  2. Boatgirl

    Boatgirl Registered User

    Jan 23, 2005
    I have unfortunately had a fair amount of exposure to this, having lost my mother with Alzheimers just 3 weeks ago, and my grandfather several years back. I would need to narrow down my comments to end of life care in a nursing home context but I am happy to go through this with you perhaps via a PM in a couple of weeks time (my mum has left behind a husband who unfortunately has just had a stroke so I am very concerned about his situation right now).
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Samantha

    I think the challenge is to know what is defined as 'end of life care'.

    My wife is in a parlous state and her 'normal' life has to all intents ended already, yet she may live for many years yet.

    I would call her current placement in a care home 'end of life care', but it is not the equivalent of a hospice type care regime for someone with terminal cancer, for instance.

    As a friend was told recently about her husband, who has Alzheimer's - "Alzheimer's isn't a terminal illness, you know".

    I hasten to add that this was from a nurse who probably hasn't the faintest about dementia. Yes, I realise that Alzheimer's itself does not cause the demise of a sufferer, but that its effects in the respiratory system, immune system etc do

    Please can you clarify for everyone's benefit?

    Many thanks
  4. Samantha

    Samantha Registered User

    Jan 19, 2005
    Thanks for raising the issue Bruce, and thanks Boatgirl for offering to get in touch in a couple of weeks. Its much appreciated.

    Good palliative care shares many aspects of good dementia care, for example it treats the whole person and it promotes what the person can still do rather than what they can no longer do. Carers are involved as much as possible in decisions about care and its aim is to improve quality of life even in the advanced stages of illness. As we know, this kind of dementia care is often not available.

    The distinction between care for people in the late stages of dementia and palliative care is very blurred and it is also very difficult to know when the terminal stage of dementia has been reached. Care may be provided in a care home, sometimes in a person's own home or in hospital and by specialist palliative care staff, general hospital staff or dementia care staff.

    Our work will look at things like recognising and reducing pain, communication skills, Snoezelan rooms, improving comfort and use of antibiotics and other interventions. These issues would be relevant for late stage dementia care and there are also likely to be issues that are particular to palliative care.

    We will also look at palliative care provided to people with dementia dying from other disease.

    I hope this helps - to summarise, the distinction between late stage dementia care and palliative care is very blurred and for this reason issues raised in our work will be relevant to both. I would be very interested to hear any thought's people have about late stage dementia care.

    Sorry this is so long!
    Thanks very much.
  5. Chris

    Chris Registered User

    May 20, 2003
    What next please??

    Hello Samantha

    I've offered to share my experiences in Private Messages as doing this publicly can leave you open to facing new aspects of these issues unsupported. While helpful messages can come down 'the line' - there is a time delay - and with VERY sensitive issues this can be difficult to deal with. also without the luxury of all the body language etc mis interpretation can occur. Usually all this doesnt matter so much & maybe just now I'm being over sensitive.......

    ANYHOW - Samantha, apart from canvassing views - are there any specific plans - is a Fact Sheet being prepared - what will the outcomes of this work be please? Sorry for the inquisition - all part of being an over anxious 'former carer' now - wanting theory to get into practice & some action for carers !!!! Unneccessary surrering is in my sights - to help reduce.

    Good to see this issue up for discussion - its a difficult one - I've been surfig the net - it seems in America there is more open talk about this. It was there I found an article (early on before I needed it ) - recalling it helped me through the worst of the decision making. eg I believe it is generally regarded that when someone is dying their need for food and even fluid diminishes - the feeling of thirst and hunger diminish. whatever the truth of this - thinking this way relieved some of my anxiety & everyone said Mum looked comfortable and resting & stable for a while - almost content - kind of waiting. There ! I'm doing what i said I woudnt !!!

  6. Chris

    Chris Registered User

    May 20, 2003
    Link to end of life in dementia website

    The page on this link says much that I feel - far more eloquently than I ever could - about hte last cople of days of my Mums life.

    http://www.bigtreemurphy.com/SOC In-Charge.htm

    Would like to know what anyone thinks of this. Thanks
  7. Samantha

    Samantha Registered User

    Jan 19, 2005
    Dear Chris

    I think that you could be right about writing about sensitive and upsetting issues on talking point. Although different people are likely to feel differently, it may be better to write perhaps general thoughts and opinions publicly and if you would like to write more about personal experiences, do so in a private message.

    As for the work we are doing, it is still in the early stages so it is not set in stone. However, I envisage the production of a report, which gives a background on the current situation, highlights good and bad practice and makes recommendations about what should be happening in end of life care for people with dementia. We can use this report to get media coverage and make sure key people and organisations see it and listen to what we are calling for. We will also use it for campaigning, both at a local level and nationally. Perhaps people could take it to their local trusts/local authorities to tell them what we think they should be doing.
    People's input into this report will really help to ensure it reflects what people really want.

  8. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi, will contribute and also send you a PM when I finally work out how!! Love She. XX :eek:
  9. Anne54

    Anne54 Registered User

    Sep 16, 2004

    Dear Sheila
    I was wondering about PMs discovered that if you click on the name of the person that you want to contact you get a drop down list including PMs.
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi, thanks Ann, another thing learnt! :D Love She. XX
  11. Jude

    Jude Registered User

    Dear Samantha and Chris,

    I've read the information on the link that Chris provided.

    Whilst the whole topic is very sad, it is also ultimately unavoidable. I feel it will be of great benefit to have such information available for when the time arises. Being aware of what will come, takes the fear out of a very emotional situation.

    Many thanks for providing the thread and the information thus far. Good luck with the research.

    Kind regards,

  12. Chris

    Chris Registered User

    May 20, 2003
    Final stages

    Hello Samantha

    Just found this webpage at http://www.alz.org/Care/DaytoDay/latestagecare.asp
    I found the following especially helpful - "The use of feeding tubes and intravenous (IV) hydration is often assumed to prolong life when in fact it could be lengthening the dying process. In addition, if these artificial means are used, families will eventually be faced with the tough decision about whether or not to withdraw such treatment."

    Late-Stage Care

    Increase size of text: A A A

    Page outline

    > Introduction
    > Advance directives
    > Artificial nutrition/hydration
    > Treating infections
    > Restraints
    > Hospice care
    > Support for caregivers


    Comfort, dignity, and respect — these are important words for caregivers to remember in ensuring quality of life during the late stage of Alzheimer’s disease.

    At this point in the disease process, people typically lose the ability to talk and walk and experience difficulties with eating. Families and care providers play a critical role in making tough decisions that ultimately respect the person’s end-of-life wishes and at the same time maintain the person’s dignity and comfort.

    Advance directives

    Ideally, discussions about end-of-life issues should take place while the person with the disease still has the capacity to make decisions.

    People with Alzheimer’s have the legal right to limit or forgo medical or life-sustaining treatment, including the use of mechanical ventilators, cardiopulmonary resuscitation, antibiotics, and artificial nutrition and hydration. These wishes can be expressed through advance directives.

    Two common forms of advance directives are a living will and a durable power of attorney for health care. A living will states the individual’s choices for future medical care decisions. The durable power of attorney allows the person with Alzheimer’s to designate a surrogate, usually a trusted family member, to make specific decisions about treatment on his or her behalf.

    Family members should not equate the refusal or withdrawal of treatment, including treatment for life-threatening illnesses (infections, hemorrhaging, heart attacks, etc.) as euthanasia or assisted suicide. In fact, aggressive medical treatment may feel like torture to an individual who is in unfamiliar surroundings and does not understand the intentions of the care providers.

    If there are no advance directives in place, families and care providers should try to make decisions consistent with what they think the individual’s wishes would have been. Typically, nursing homes and hospitals have ethics committees that can facilitate the decision-making process if there is a conflict between family members or with the care provider.

    Back to top

    Artificial nutrition and hydration

    People with Alzheimer’s may also refuse to eat and drink. Such cases should be evaluated to make sure that they are not due to conditions, such as constipation, kidney failure, nausea, and fluid and electrolyte imbalance, that could be reversed with medications.

    One of the more difficult decisions for families to make is whether or not to withhold nutrition and hydration in response to a patient’s refusal to eat or drink. Many families and care providers believe that it is appropriate to do everything in their power to get the person to eat or drink. The use of feeding tubes and intravenous (IV) hydration is often assumed to prolong life when in fact it could be lengthening the dying process. In addition, if these artificial means are used, families will eventually be faced with the tough decision about whether or not to withdraw such treatment.

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    Treating infections

    Pneumonia and urinary tract infections are common in the last stage of Alzheimer’s. The person’s advance directive should indicate whether preventive measures such as pneumonia vaccines and antibiotics may be used. If the Alzheimer patient does not wish to receive these, care providers can use medications to reduce pain and make the person more comfortable.

    If the patient cannot talk, it is important to look for behavioral clues such as depressive or psychotic symptoms, anxiety, and sleep and activity disturbances that may indicate he or she is experiencing pain.

    Back to top


    Restraints may be used in long-term care settings and hospitals as a means to control Alzheimer-related behavior problems such as wandering, agitation, and combativeness. They are also used to prevent patients who are receiving artificial nutrition from pulling out the feeding tube.

    Although restraints are intended to protect the safety of the patient, their use can cause harm as well as jeopardize the individual’s independence and dignity.

    According to the Joint Commission on Accreditation of Health Care Organizations (JCAHO), an organization that evaluates and accredits health care organizations, studies have demonstrated that effective programming can eliminate the need for restraints.

    Physical restraints restrict the person’s ability to move and, as a result, can cause incontinence, loss of muscle tone, pressure sores, depression, and decreased appetite.

    People with Alzheimer’s have the right to receive care without the use of physical or chemical restraints that are not needed to treat a medical condition. Care providers have an obligation to try alternatives to restraints, such as diversions for aggressive behavior or safe places to wander.

    Back to top

    Hospice care

    People with Alzheimer’s disease will likely be in and out of nursing homes and hospitals as the disease advances. One unique care option is hospice.

    The underlying philosophy of hospice focuses on quality and dignity by providing comfort, care, and support services for people with terminal illnesses and their families.

    Hospice places an emphasis on maximizing patient comfort and providing counseling and bereavement services to the family before and after their loved one dies.

    To qualify for hospice benefits under Medicare, a physician must diagnosis the person with Alzheimer’s disease as having less than six months to live.

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    Support for caregivers

    It is important for caregivers to seek support, particularly during this difficult stage of the disease. Local chapters of the Alzheimer’s Association have support groups and help lines that allow caregivers to deal with the emotions they may be experiencing, including stress, grief, guilt, anger, and depression.
  13. sarahfromBucks

    sarahfromBucks Registered User

    May 17, 2005
    Palliative care - confusion over its meaning

    Hi Samantha

    First, let me say that I pin much hope on your researches, and wish you and all at the Society concerned with this topic the strength and tenacity to see it through.

    In your post of 25-01-05, you mention "Good palliative care shares many aspects of good dementia care, for example it treats the whole person and it promotes what the person can still do rather than what they can no longer do ". This is what I understand by "person-centred care", and, surely, is a given for all stages of care. I would like to use a term that everybody can understand as being the care needed when I am close to death. Palliative care used to mean the alleviation of pain and pyschological distress when one is close to death, and if this has changed to mean something much broader, there could be confusion. When my Mum was close to death, with what I call "Very Late Stage Dementia", she could express herself in her rare Windows of Understanding, by raising an eyebrow, coughing more vigorously if she was awakened and understood what I said, or snuffing and dabbing at her nose, if she was distressed when I or my brother left her. At this stage, there isn't a lot of room for interpretation of her wishes or abilities, and I was probably the only person to have picked up these tiny signs of someone still being there inside that tiny body.

    My Mum died in January, and I wrote to the Society at that time with my experiences, and thankyou then for your kind letter in reply. Now the grief is less sharp, and my anger subsiding, I still want to use the feelings I experienced then to make some changes happen - by supporting the Society's (eventual?)campaign, or canvassing a few opinions from hospice and nursing staff.

    I'd love to hear the feedback from your pre-election questionnaire (in the Campaign newsletter), and whether palliative care (or the lack of it) is a major issue with carers. One problem that may be highlighted by the small number of posts in reply to your thread, is that when someone you loved has died in bad circumstances, the reaction may be to turn away from Talking Point, as an aid to trying to rebuild our lives. We then lose valuable insights. "We" being relatives, who in our turn, may face dementia later on, and know all too well what to expect. For our own sakes, as well as for all those still living through the pain of losing someone slowly, I think we need everybody's experiences and suggestions for how things could have been better.

    I wish I'd found "Talking Point" sooner. It's been a help, although sometimes feels like "wobbling a loose tooth", when I read other people's distress.
  14. sarahfromBucks

    sarahfromBucks Registered User

    May 17, 2005
    Radio 4 "Inside the Ethics Committee" - lots of parallels with dementia end-of-life

    Hi Samantha

    It's probably bad etiquette to keep on adding to a thread, but maybe the Moderators will rap me over the knuckles when they judge I've over played it. For those who like keeping an eye on what the media make of dementia, the Radio 4 series "Inside the Ethics Committee" completes its run by looking at a patient who may or may not be dying with terminal lung disease - so not very different from the effects of very late stage dementia. It goes out again on BBC Radio 4 Wednesday, 1st June, 8pm.

    I didn't hold much store by ethics committees before this programme, but if they are as well composed as the "model" studio committee, and met regularly in nursing homes, I see that they might improve end-of-life care. Not because there will be anybody on a ventilator in a nursing home, but because the point of deterioration when pain relief can be started without laying staff open to litigation, (the "double effect" problem), is very tricky. In my mother's nursing home, it was one of the senior nurses who had undertaken a palliative care course sometime in the past, who took these decisions. She would then let the doctor know on his weekly or bi-weekly visit, that a resident was in pain, or might be thought to be in pain - no real measurements were ever taken. However I might resent my mother's nurse for failing to put pain-relief in train early enough, I can see that litigation is a huge worry, and that a nurse will need support in coming to that decision. Perhaps relatives could bring their concerns to ethics committees, when nurses (and so doctors) have refused to withdraw drug treatment that is lengthening the dying process, or start pain-relief. The participants in the programme felt that too many elderly people may be put under duresse to make advance decisions. However, I read reports in the American journals, where advance decisions have been around longer, that few dementia sufferers there ever make them. So the problems will remain.

    Talking about measuring pain, does anybody know if this is ever done for dementia sufferers who are mute (as my mother was)? It seems so easy to measure, for example, a pulse rate regularly: there are lots of simple finger stall or wrist monitors available that can do this and store a record - should be quite easy when a patient is bed-bound and quiet. Perhaps it isn't as straightforward as it might appear. I also saw residents having pin-pricks done for sugar levels - maybe there is a simple test that can be done on a small sample of blood for raised hormone levels associated with stress?
    In hope, Sarah
  15. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Hello Samantha

    I have somehow managed to miss this thread until now, as I only drop in to the "Raising Awareness" slot occasionally now.

    This is a topic that I am very interested in, as my husband is in an Elderly Dementia Unit with late stage Alzheimers, and I have terminal cancer, which showed up soon after he was admitted.

    I had always felt that provision for late stage care differed greatly between the two diseases, and my experience has now borne that out.

    The issues that have already been raised are all so relevent - for example, I have been able to write an advance directive, whereas all that has been discussed with me by the hospital is whether my husband should be resuscitated should he have a major cardiac arrest or stroke. I know that now I must make it clear what I believe his wishes would have been regarding artificial feeding and hydration and "double effect" medication. But if I die first (quite likely), it will be his then "next of kin" who will actually make the decisions, and although I trust their judgment, and they understand my feelings, I can not guarantee that their emotions will not lead them down a path that I know my husband would not have wanted.

    I have been able to discuss at length with my GP and Cancer Care nurses what my wishes are, eg where I would wish to die (home is out of the question, sadly, as I have nobody who could act as full time carer), but whether hospice or hospital, and if the latter, which hospital, and who I want to have overall professional responsibility for my care.

    These are just personal examples, but I feel that the difference in approach is significant.

    I will try to PM you with more constructive thoughts, but am starting a second course of what is likely to be quite difficult chemotherapy in three days time. However, if you have any specific questions you would like me to answer, please do PM me and I would be pleased to answer what I can, as I like to feel that I still have a purpose in life! I will check out this thread as often as possible.

    Thank you.

  16. Samantha

    Samantha Registered User

    Jan 19, 2005
    Thank you to everyone for continuing to raise interesting and valuable points. Its clear that palliative care is an issue that is important to people with dementia and their carers. The Society's pre-election survey, asking people what would make the most difference to their lives, found that palliative care was in the top ten priorities for people. 55 per cent of respondents placed palliative care in their top ten of dementia care issues for whoever is elected.
    Other issues that are relevant to palliative care, as well as all stages of dementia care, also came in the top ten - these include end care charging, more specialist homes, and care staff training. Of course people's priorities would be affected by the stage of illness they or the person they cared are at.
    I shall look into pain measures for people with dementia who are mute and get back to you.
    Thanks again

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