Currently showing: Funding longer lives > Long-term care


19 Aug 13 12:50

My grandmother has Alzheimer's.

It's awful.

It simply breaks my heart to see the person I so love vanish, step by step. But much worse is watching how she struggles as she loses grip. She's perfectly aware of the fact that she's losing herself, her life, her memories. And she suffers immensely when we visit and she can no longer tell who we are, although she knows that she knows us and that we are dear to her.

My grandmother moved to Cape Town two days after I was born. A widow since the age of 42, she lived with us until I turned 12 and we moved to Brussels, at which point she stayed in Spain. She was a mother to me and we shared millions of beautiful, wonderful, hilarious, touching, deep, insightful moments together. She is one of my favorite people on this planet and I wish I could take as good care of her as she did of me for all those years.

My grandmother is from Castilla, a hard land with hard, robust, strong people who worked the arid land from dawn till dusk. Her body is in such good shape, I can see it lasting for many years to come.

But not her mind. The relentless advance of Alzheimer's is erasing her mind, one day at a time. She no longer has anything near what I would call a "quality of life", and it's about to get a whole lot worse, as the illness claims larger and larger chunks of her. Inevitably, she will be reduced to a Q-sign vegetable, unless another illness claims her before.

So I'm wondering: Is it fair to make her live through the ordeal? For what?

Now let's look at the issue from a financial perspective. Let's say my grandmother's mind is completely gone in 5 years, but her body lives another 20. Is it fair (not to mention sustainable) to keep all these "eternal" bodies going when there is no hope of their minds ever coming back? In a world of increasing pressure on access to medical care (and broke governments!), are we seriously saying we'd rather reduce the amount of much-needed care given to a young mother, aspiring student, jobless family bread winner, etc so as to keep my gran's body going?

As much as I love her, and because I love her, I'm advocating for adults to be asked to sign a living will routinely, which in my view should include our stance on assisted suicide, organ donation and wishes on what to do with us if we become irreversibly senile. Of course, this until our advances in neural medicine catch up and solve the problem first.

It's a really tough topic, I know. Any takers?


Category: Funding longer lives: Long-term care

Location: Barcelona, Spain


10 Comments

Ben Dansie - 19 Aug 2013, 3:19 p.m.

I think the Netherland's have a very progressive approach to this - http://www.spiegel.de/international/europe/dutch-village-for-elderly-with-dementia-offers-alternative-care-a-824582.html - I think it's a very sensitive and decent approach. The BBC in the UK were criticising it for not being 'real'. Who can say what is real or not to a sufferer of dementia.

My wife's business partner developed Alzheimer's and subsequently passed away and it was terrible to see both the effect on her and her family.

I think society has to prepare for the effects that longer lives will have.

There's a nice initiative in Cornwall where a service is available at old people's homes called The Memory Box. A person visits with a set of what are essentially prompts - jogging people's memories. Sometimes it's a school hymn, sometimes a game. Often the brain just needs a jog and the memory comes back. Keeping the neurons in our brain fit really can help. In Cambridge (it used to be downstairs from our office) is the University of the 3rd Age - for people aged over 65.

Daniel Martin Eckhart - 19 Aug 2013, 3:46 p.m.

I hate this topic. And by hating it I realize just how much it really touches me. I'm seeing the beginning of Alzheimer's in my mom. And, for some reason, way before then I supported a crowdfunding documentary on the topic. The documentary is quite relevant. It's about a young caregiver who spends years with an Alzeimer's patient. You can read about the project here > http://mrdriftwood.com

In essence the case they make, through several years worth of footage and very personal experience, is that the life of an Alzheimer's patient CAN still be worth living IF they are given that kind of attention, tender, loving, personal, constant care ... that of course is rarely possible (or is it?) and a financial issue for sure.

Personally, I'm with you, it's about choice. If it were me, I'd want that form - I'd want to "sign off" before becoming a vegetable. Choice.

Alicia Montoya - 19 Aug 2013, 9:57 p.m.

@Daniel: Thanks and yes, I supported Mr. Driftwood too! And I agree with you, it's all about choice. But that is strongly determined by culture. In my culture (Catholic), death is not a choice (in fact, isn't it a sin to choose death?) and offering somebody that choice is pretty much considered barbaric (instead of, as I'd argue, compassionate and loving). As for quality of life, hmmm, I guess it depends how you define it.

@Ben: Funny, was just speaking with my parents and they're going to University in Spain, for which they pay 64 euros a year. And the Professors imparting those lectures do so for free! Isn't that amazing? And while some would argue that that's an unnecessary state spend, think about how much many the Spanish state is saving if it's preventing or slowing down the advance of dementia in even a fraction of its citizens. Not to mention the value of keeping all these lovely and loved citizens active, valuable, happy members of society :)

Ben Dansie - 20 Aug 2013, 5:42 p.m.

@Alicia. If they come to the UK they can find further info at http://www.u3a.org.uk/ . My dad is 86 and is 20 years into his alternative theory of evolution. Either he'll finish it or evolution will finish him! Learning never need stop.

Alicia Montoya - 21 Aug 2013, 5:21 p.m.

@Ben: You know what would be interesting? To compare the total investment in those programs versus the total cost of not having them (i.e. the total cost of caring for cases of dementia that have not received that kind of service). Of course, that's super hard to quantify and it would only be indicative but it might give us an idea of the financial balance (positive meaning less investment than savings in care, negative being more investment than savings/returns) and magnitude (3x? 5x?).

As for your dad, I'm banking on him!! :D

Richard Phipps - 27 Aug 2013, 8:39 a.m.

@Ben: I saw this product/service over the weekend and immediately thought of your comments re: Memory Box.
http://www.peterjones.com/peter-jones-portfolio/reminiscence-pods/
Also, I have a relative who volunteers at a Memory Cafe in England:
http://www.memorycafes.org.uk/

Nicola Oliver - 28 Aug 2013, 11:52 a.m.

It's a familiar and sad story you tell Alicia; I'm sorry. I worked for about a year in a care home for elderly female patients with dementia before I trained as a nurse many years ago. The age range of the ladies was from 65 to over 100 with varying degrees of disease progression. My observations during that time, which, incidentally, was a time of work that I really enjoyed, was that the distress seemed to be mostly experienced by the families. In part this appeared to be due to their perception that their relative must be suffering, and in part due to the feeling of inadequacy that their relative was in a care home. The care home was an amazing place where the staff had time and energy to spend time with the ladies, talking about their lives and experiences. One lady had even met Queen Victoria. I learnt a huge amount about care, compassion and the richness of life. But I can honestly say, that the worries that the families held regarding the perceived suffering of their relative was mostly needless. The close contact that we had with the ladies in our care showed me that, most of the time, the suffering was experienced by the families to a greater degree than any that the ladies may have. It was the idea that somebody they loved changed and forgot that caused such distress which was so understandable. @Ben - I agree, whose to say what is real or not to a sufferer of dementia? Quality of life is an almost impossible definition to agree on. Many surveys have asked older people, 'are you healthy?' 'Are you happy?' and then compared this to the perception of their health and happiness of their immediate families; a mis-match often arises.
I think what I'm trying to say, is that we can't look into the minds of those with dementia and understand how they feel; but my experience in that incredible nursing home taught me that it may not be as distressing as we might think.

Alicia Montoya - 29 Aug 2013, 3:44 p.m.

I love these grass roots initiatives mushrooming all over the place. I'm no expert but seeing government balance sheets I think we can safely assume we (citizens / consumers / i.e. us plebs) will need to support each other in many aspects for which we previously relied on governments.

Alicia Montoya - 29 Aug 2013, 4 p.m.

Thanks for that, Nicola. I'm glad to hear that and it's nice to think that a lot of the time my gran may be much less unhappy (dare I say, even happy?) than I thought. However, I have seen her struggle and cry at not knowing who I am though she blatantly knows I'm dear to her. I've seen her struggle when memories criss-cross or have vanish around her siblings and parents passing (which she no longer recalls - in fact, in some instances, she thinks I'm her sister)... And I have seen her struggle with her memory and she seemed so lost and scared and disoriented. Maybe I'm overplaying it. Maybe I'm projecting. I certainly hope she's one of the cases you describe. I have so many dreams about her. I'm sure you're right about the feelings the family members experience. I have all of those!! Thanks for sharing your experiences and making the load lighter :)

Alicia Montoya - 14 Sep 2013, 9:47 a.m.

Just came across the UK's Alzheimer's Society who have a whole section on "Advance decisions and advance statements" where you can state your choices on how to be handled in the case of dementia. Very cool. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=143

Should insurers and advisors include this kind of thinking into their offers? Do they already?


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