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People living with dementia face a lack of support on end-of-life care

Rosemary, who cares for her husband Don, says people with dementia are in the dark on end-of-life care.

Family carers of people living with dementia often aren’t made aware of palliative and end-of-life care services and supports. Megan Stoyles tells the story of one couple who has been affected.

Rosemary, who lives on the outskirts of Melbourne, has been caring for her husband Don who was diagnosed with Lewy Body dementia six years ago.

However, Don had been living with dementia symptoms for almost a decade before he received his diagnosis – experiencing anxiety, hallucinations, paranoia and aggression, which made life within the home a challenge.

In recent years this had culminated in an acute emergency admission, and 11 months spent in the psychiatric ward before a residential aged care place could be found.

Many aged care facilities had refused outright to admit Don once they were told of his Lewy Body diagnosis.

“Despite most aged care residents having some form of cognitive decline, the facilities knew, I guess correctly, that they couldn’t cope with the aggressive behavior or violence that is part of Lewy Body,” Rosemary said.

Don is now living in an aged care facility specialising in psychiatric disorders and behaviours, and while it is “pretty ordinary” in terms of décor and facilities, the staff can effectively manage his behavioural symptoms.

Four days a week, Rosemary travels an hour each way from home to spend three or four hours with an often unresponsive husband.

Two of her children visit him to do the same on other days.

“Everyone needs to be touched,” says Rosemary.

Apart from attending to his personal hygiene, feeding him lunch and doing his washing, Rosemary also takes in mementos of his life and their life together, plays music, sings, dances with him and tells him stories of their life in past times.

“It’s four hours a day to take him away from sitting in a chair doing nothing.”

Rosemary also provides a human touch – literally and figuratively: “Everyone needs to be touched or cuddled in a friendly or loving way.”

Finding this facility for her husband has improved the quality of Rosemary’s life, giving her a small amount of time to find balance in life.

She uses much of this time with a local dementia carers’ group in Woodend that helps with accessing specialist help and information from dementia, carer and palliative care organisations.

Rosemary said there is inadequate access to respite for carers in the region and the group is busy fundraising to build a local respite guest house facility for those in the early stages of dementia.

“It will take a huge amount of work, but someone has to start.”

Lack of palliative care

But perhaps more worryingly, Rosemary said that palliative care for Don has never been raised, yet it was offered immediately to her son when he was diagnosed with terminal cancer.

“His doctor said they always raise the subject when the diagnosis is made, even if the patient may not want to think about it then.”

Rosemary said:

“People with dementia, let alone their families and carers, don’t seem to be considered worthy of palliative care. And yet their need can be much more protracted than others with dying relatives or family.”

At a recent carers’ forum on palliative care in her area, Rosemary said that most of those in attendance were caring for people living with illnesses other than dementia.

When she asked about dementia, Rosemary said she was told that funding is not available for the system to provide palliative care for dementia.

“I hope I could be reassured that it would be available at the time where they feel or I recognise he’s in that stage when he’s winding down.

“Someone should come and visit and talk about what’s available, about what or who could come in and assist with extra needs and support, spiritual and religious contacts for you and your loved one, so that it’s not left to the last 24 hours, and you’re not totally alone.”

Health and aged care policy makers must realise that people living with dementia still matter, Rosemary said.

“They may seem to be unaware but surely they’re entitled to respect, dignity, calmness and love. Even animals get that care.”

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2 Responses to People living with dementia face a lack of support on end-of-life care

  1. Anonymous March 2, 2017 at 8:10 am #

    Rosemary ….people with dementia should matter! Your strenght with all you have been through and what you are trying to do is inspirational. I have shared this story and support all you are saying. Your story highlights a whole lot of issues for your own situation and that of many others. Please let me know about your respite house….what can I and others do to help you and your group? Rosemary we all have to start looking past the disease and looking at the person…a person who is someone’s husband, father, friend , grandparent…and is entitled to quality care, safety, love and support…it’s part of human rights. Stay strong Rosemary.

  2. Maria Berry March 2, 2017 at 8:28 am #

    Rosemary your story highlights so many issues faced from your journey with your husband. It always seems to be those that go through the most that are the strongest people. I have shared your story and hope others do in support for yourself and many others going through similar experiences. We all need to stop and realise we are dealing with people, the disease is the issue not the person. As part of human rights everyone is entitled to quality care, respect, access to care and treatment and support. Love is the extra word that should be put in there! Your strenght is inspirational, please don’t give up. Let us know about your respite house, yes there is an absolute lack of respite and support for carers out there everywhere. How can I and others help win your respite house? Please let us know. Palliative care…as an ex-nurse totally appalled that palliative care is not funded for people with dementia….I have a father with dementia. Yes we do treat animals better…..the RSPCA would ensure that. Also again we go back to “human rights”. Stay strong Rosemary and don’t give up the fight.

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