People with dementia are dying in misery because of a "double stigma", campaigners warn today.
Families are reluctant to discuss their illness and equally reluctant to talk about death, according to the Alzheimer’s Society.
This means that as disease progresses patients are unable to express their wishes.
The Society calls for greater awareness of the need to plan the final days in advance.
In 2010 just 6% of people with dementia died in their own homes – compared with 21% of the general population. Other surveys suggest that two thirds of people would prefer to die at home.
Researchers found that in many cases people with dementia had not discussed their wishes – and this led to services not being put in place to support them.
The report highlights the indignities that dying patients are often subject to. Relatives and carers reported patients being left in pain or sitting in their own waste products. One patient had a dislocated shoulder for 11 days.
Society chief executive Jeremy Hughes said: "It’s hugely worrying that so many people with dementia are not ending their lives the way they wish or deserve to.
"Dementia is the third leading underlying cause of death in women and seventh in men; we cannot keep hiding from it. It requires careful planning."
One of the relatives interviewed by researchers Francine Collison, from London, said: "My husband, Alan and I had already had conversations about the end of our lives before he was diagnosed with dementia. So when the end of his life was near I was able to make the decisions I knew he would want me to make with complete confidence and he was able to pass away the way he wished to.
"I believe it is imperative that where a conversation about end of life wishes hasn’t happened before someone is diagnosed with dementia, families find out what their loved one would like while they’re still able to express their views."
The report was backed by the Royal College of Physicians.
Vice-president Linda Patterson said: "As rising numbers of older people with dementia are dying in hospitals and care homes instead of at home, it is even more important that doctors and other members of the healthcare team are trained to treat patients with dignity, communicate fully with carers and relatives, and support decision making on end-of-life issues."
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