6. We Need to Talk about Dementia and Palliative Care

The introduction of palliative care for people with dementia is relatively new. Today on the island of Ireland, palliative care aims to ensure that a person with a serious and/or progressive illness, regardless of age or condition, has the best quality of life. Unlike before, dementia palliative care can be introduced after a person has received a diagnosis of dementia. Palliative care may be appropriate for a number of years, not just the weeks and days at end of life. However, in 2009 when caring for my late husband, Noel, who was bravely and stoically living with vascular dementia, as it was not generally the practice then, I challenged this.

In the late stage of Noel’s journey, when he could no longer verbalise or communicate and his immune system was breaking down, it became quite clear to me that he was in considerable discomfort, even in pain. Through his consultant, I sought advice on how to introduce palliative care to alleviate the obvious pain albeit physical or mental. At this stage of the journey, Noel was in hospital. The hospice clinical specialist, accompanied by a palliative care nurse, visited Noel in the hospital to examine and assess him and I was requested to attend. The specialist did indeed recommend palliative care. However, he considered that the move to the hospice would cause Noel considerable anxiety and he did not want to add to the discomfort or pain he was in already. Hence, he arranged for two palliative care nurses, one to call in the morning and the other to call in the evening, to administer what he prescribed. I know that the palliative care was of great benefit to Noel as he became calmer and more peaceful in the later stage. After a short period of time he passed away peacefully and free of pain. For me, it was the right course of action and for which I am very grateful. For carers and families on the journey with their loved ones living with dementia, it is heart breaking to observe their distress and pain. An overwhelming sense of helplessness prevails. Even guilt at their own inadequacy to comfort and relieve the suffering intrudes.                           

Dementia palliative care involves supporting the person with dementia and his or her family to address and relieve the pain, distress and discomfort associated with advancing dementia.  When appropriate, after receiving a diagnosis of dementia, they are invited to participate in making decisions about their future care. As it is very difficult to talk about dementia and end of life wishes, it is not always easy and in some cases impossible, which poses a dilemma for the primary carer (be they spouse, son, daughter, friend or other family member). Much stigma remains around dementia. Because of the stigma surrounding dementia, there are many implications for the lived experience of the person with dementia and their carer. This can lead to withdrawal from social and community life, family and friends. Because of the stigma many are slow to attend their General Practitioner (GP) with memory problems.  Generally, when a person presents to their GP worried about their forgetfulness, because dementia is not easily diagnosed and there is no one test to diagnose it, the GP will order tests to rule out any underlying organic condition.  With a negative response, some GPs will refer the person on to a specialist consultant in the field if he/she suspects a form of dementia. Many people go undiagnosed until the condition has progressed which is why it is so important for people to be aware of the possibility of memory loss being one of the first signs of Alzheimer’s dementia. This was the case in our situation.  We had never heard of it in people as young as 62 years resulting in the diagnosis being a shock after changing GP and obtaining a second opinion over two years into our journey.  This was compounded by the fact that ‘dementia’ came under Older People’s Services which commenced at 65 years meaning there were no supports or services for us for the first 3 years of our journey.  Throughout the rest of the journey, our GP was tremendously supportive playing a major part in accessing services through referral to the Memory Clinic Team, led by a consultant psychiatrist for old age. On transition to residential care/hospital which was traumatic, our GP again was very supportive to me on feeling guilty relinquishing my caring role and was available to me by telephone to discuss any worry.

Adjusting to the diagnosis and coping with the trajectory of the condition means people with dementia, their carers and families engage with services differently in navigating the complexity of their individual needs, as no two cases of dementia are the same.  During the course of the condition may involve specialist services in either or all neurology, gerontology or psychiatry for old age and ultimately specialist palliative care. Initially, all we as a family needed was good quality dementia care throughout our journey.  We did not identify with palliative care until the consultant broached the subject of ‘Do Not Resuscitate’ following a second severe bout of pneumonia. GPs, dementia care advisers and community services play a vital role throughout the trajectory of the condition with their support through day care, home care, respite care, acute care, and long-term care.  These changes can cause some stress but facilitate the opportunity to discuss future care plans, anxieties and when to introduce palliative care.  I recommend that anyone diagnosed with, or living with dementia to request dementia palliative care from his or her GP or other trusted healthcare provider. In addition, it is important for anyone living with dementia to discuss with their loved one and their GP or consultant their personal wishes for their future care to ensure they receive medical care that is consistent with their values, goals and preferences.

The Alzheimer Society of Ireland, a national non-profit organisation, advocates, empowers and champions the rights of people living with dementia, their carers and their communities to quality support and services. If you would like to learn more about dementia, getting a diagnosis or services and supports available for people with dementia and their carers please visit www.alzheimer.ie. In addition, The Alzheimer Society of Ireland operates the Alzheimer National Helpline offering information and support to anyone affected by dementia on 1800 341 341.