The Long Goodbye: Alzheimer’s Disease
For Alzheimer's Dementia families, love is making hard decisions.
Posted Mar 17, 2012
How true to life is this beautifully written and filmed version of one of the most cruel and common of diseases, Alzheimer's Dementia (AD)? On the surface, few Alzheimer's patients are as beautiful in their sixties and seventies as Julie Christie. Yet there is reality here: in the early stages of AD, people retain their social skills and their care for their personal appearance and hygiene. I remember an occasion when I was working in the clinical research hospital at MIT, mistaking the husband of a couple sitting in the waiting room for the AD patient. He looked old, somewhat unkempt and grumpy, whilst his wife was beautifully made up, elegantly dressed, and greeted me warmly with a firm handshake. She was in the early middle stages of AD, already with significant memory loss, and beginning to wander. He was a highly intelligent and healthy retiree!
Keeping AD patients at home in a familiar environment for as long as possible is generally considered to be the best thing to do -- for the AD sufferer at least -- as this provides cues for their memory and thus decreases their confusion. In the film, Fiona went into a nursing home rather early. That this was largely at her own insistence, makes this an unusual scenario. Most elderly patients understandably fight against being taken from their home for as long as they are able. For them, this must be the proof that their end -- and a frightening and drawn-out one at that -- is unavoidable. For families, moving their parent or grandparent into a nursing home is painful and guilt-ridden, yet there is an underlying sigh of relief. The responsibility and stress caused by caring day in and day out for someone with advancing AD is enormous. Often the burden of nursing falls on the woman, and children in the family can be disturbed by their AD family member's behaviors -- often including paranoia, inappropriate behavior such as walking naked outside, and temper tantrums. Many research studies have shown that the family carers -- usually women -- of AD patients have a significantly higher rate of clinical depression than other adults of a similar age and socio-economic group.
So Fiona's loving determination to go into a nursing home before she became too demented gives food for thought. The nursing home's tough rule that new patients could see no-one from their family for the first month to allow them to "settle in" may also be a sound one. In AD, if there are no memory cues around, and the patient is kept occupied, this may reduce the confusion and stress that flashes of memory may cause. In Fiona's story, after 30 days in the nursing home, she no longer recognises her husband. Such a rapid memory deterioration is unusual, but certainly more likely after a month with no contact with her past. Fiona's sweet and gentle personality stayed with her while her memory disappeared, although she became sad and depressed when her new man friend left the nursing home. Depression is common in the early stages of AD but as the dementia worsens and the patient loses insight, the depression usually lifts. If we had followed Fiona for longer, her personality would have changed and her sweetness might have been punctuated by delusions, paranoia, apathy, and emotional outbursts.
In real life, the decision of whether and when to place an AD relative in a nursing home is one of the most difficult decisions the family and the AD sufferer will have to make. It will be "informed" by financial considerations, how good the nursing home is, and how difficult it is for the family to care for their AD relative so that they will be safe, and the family will not be fractured. Family counselling from the time the AD person is diagnosed can make this later transition less stressful for everyone, and give the AD sufferer control over their lives for as long as possible. Even control over small parts of their lives can make an enormous difference to their dignity, and give the family ways they can show their love and respect. Sadly, as the dementia worsens, it is the family who needs counselling: the long goodbye that is a hallmark of AD is synonymous with the grieving process.
(Another beautiful novel that gives insights into the human side of AD is "Still Alice" by Lisa Genova. A chapter in my book "Trouble In Mind" tells the story of Sophie and how she took control of her life choices and the memories she wanted to leave for her family.)