Expert: Mary Gordon - 8/16/2010

Question
Hi Mary,
My sister has early onset dementia, she is 58. She is currently living in a nursing home in Michigan. Her son and daughter could no longer take care of her due to work obligations etc.. My sisters and I want to move her here to California. I called her today, and she just cryed...she said they were being mean to her, she couldn't put sentences together, said she was scared of all the screaming from all the other residents, which I heard in the backround and made me sick to my stomach. I don't know what "stage" she is in, but we want her here with us and her family would agree,she needs to be with her sisters at this point in her life. What do I need to do to expedite this process? As you know, everyday is critcal, as she might not even know us tomorrow. And, would moving her even be a good idea? Thank you and God bless you for any insight you may have...

Answer
Hi Frieda,

I know this is very difficult and you are grieving over the situation. You miss your sister terribly, you love her and you want the best for her

I want you to stand back from this, and think about it objectively. If your sister has gotten to the point where her children couldn't look after her in a home environment, and she's in a nursing home, rather than assisted living, that should give you pause. It means she needed 24/7 support and supervision and a lot of physical care. The reality of people with advancing dementia is that they literally cannot be left alone for a minute. They are like a toddler in an adult body - and you cannot trust them not to wander off, not to hurt themselves with hot water, appliances, not to eat inappropriate things, let strangers in, cause a fire or a flood.  She will need help with every aspect of every day life from eating to dressing, from toiletting to the most basic hygiene. She will have no judgement. She will get lost even in a familiar place. She will have disturbed sleep and wake often at night. She will become incontinent, if she is not already. She will have limited emotional control and no self insight. She won't be able to reason and come to a sensible conclusion about what is happening and why. Her muscular coordination is deteriorating – which means fine coordination as well as swallowing, walking etc. Her ability to recognize people and places is deteriorating as well as her memory.  And like children, people with dementia cannot always recognize or be grateful for all the work and effort those who love them put into looking after them and keeping them safe.

Her children love her and know her better than anyone. No one wants to put their mother in care. You must realize that this was not a decision they made lightly. From what you describe, I strongly suspect she is in Stage 6. See below my signature for a description

She still looks like your sister, has her mannerisms, some of her personality and temperment, some of her memories. However, in very fundamental ways, she is not who she was. She has damage to every part of her brain – this is not just an illness that causes forgetfulness.

You are also very far away and not with your sister full time. This is really not like taking on the sister you remember, just a little more forgetful. This is taking on the full time relentless care of a person who may not even really know where she is and who she is with, and who is going to relentlessly go downhill and need more and more and more. Your entire life will revolve around her care. I don’t say that to be cruel, but to get you thinking realistically.  

As heartbreaking as her phone calls may be, you should realize that she may be very confused about her situation – and although she may seem distressed, it may not be about something sensible from the perspective of a person with an intact mind.  Seeing what is going on in person can reveal a very different picture than what you get over the phone - both better and worse (it can sound terrible and not be so bad, or they can make everything sound rosy when things are a mess).  They are not the most accurate of reporters!

Just to give you a few examples – by Stage 5, my mother in law needed a lot of supervision and support with dressing and hygiene. She really was like a toddler in that regard. If you didn’t assist with every tiny step, it just wouldn’t happen. She’d emerge filthy, with dirty clothing in layers, her bra on sideways knotted up with safety pins. She’d insist she’d bathed, even when she smelled – she really couldn’t remember what she’d done or not done. She deeply resented help and she couldn’t follow verbal instructions – and it took a huge amount of tact, patience and cajoling to accomplish – just getting her cleaned up and dressed could take hours. Sensory changes made her very sensitive to temperature and the feel of water on her skin, and she’d often freak out. She could carry on a very good social conversation far into her illness, and she’d tell anyone who would listen about assorted cruelty when all that had happened was a bath, a hair wash, tooth brushing and a set of clean clothing. She even got it into her head that the short haired female aides helping her to dress were MEN trying to assault her. When she wouldn’t let them put her dental plates in place, she told us mean boys had hit her in the mouth and that’s why she had no teeth.      

She also got very upset and told us about how awful some of the other residents were. She told us about conversations that could not possibly have taken place – she would relate stories where she claimed other residents had said terrible things about her family, involving bringing up specific details of events many years in the past no one could possibly have known about other than her. It was pure delusion – no different than her claims to have nice visits from various people who couldn’t have visited her (i.e. they were long dead). Her mind was all in a jumble and she didn’t know what was real and what was a memory, a dream, a delusion.

Don't get me wrong - her emotions were genuine - but what sparked those emotions was often a jumble. I guess what I’m trying to get across is that people in mid and later dementia are often distraught, confused, agitated, depressed – and they can have a lot of difficult behaviors that go with those moods – and because their perceptions, reasoning and memory are impaired, you can’t talk them out of it. You can’t reason with them, you can’t get them to cooperate, you can’t convince them everything is okay. Quite often they need a very sheltered environment, with very set predictable routines, careful handling and sometimes medications to give them a better quality of life (such as antidepressants)

On top of that, there are many complex legal and financial issues in this situation. Care for a dementia patient is very expensive – even in a home situation, you are likely to need some help with her and there will be expenses. Powers of attorney are not transferable (i.e. your sister cannot legally sign documents anymore and she is the only one who could have named alternates). Whoever is looking after her will need to be able to manage her assets for her benefit, and also manage her medical situation, including insurance, talk to doctors, etc. Medicaid and Medicare rules vary from state to state and are extremely complex. You would want to get some legal advice about this before even thinking of doing anything.

If you moved her, someone would have to fly out and escort her back (preferably same sex, because someone will have to be with her every minute - you can't even leave her sitting on a bench to use the washroom or stand in line for a coffee). The house would have to be modified to facilitate her care – removal of clutter, trip hazards, installation of grab bars and railings, potential modifications to stairs and bathrooms, and potentially purchase of specialized equipment such as door alarms, a hospital bed. Because her short term memory is impaired, she will not easily adapt to a new surrounding (i.e. she will not be able to “learn” new layouts easily, such as knowing where the bathroom is or her bedroom).

Consider also that you are taking her away from her children, who won’t be able to visit her. They will not be able to maintain any kind of relationship with her as she declines. If she comes to California, she is likely to remain there until the end, as it becomes more and more difficult to transport them as the illness progresses.

Think really carefully about who needs to be with whom. Is this really about who she is now and what she really needs, or what the rest of the family wishes could be? The emotional truth can be hard to figure out.

My best advice ? Book an extended holiday, go out to Michigan, and spend a few weeks with her. I mean REALLY spend a few weeks with her. Rent a cottage or a furnished apartment, and take her to stay with you. Spend a few days at the nursing home with her, from first thing in the morning to bedtime. You need to really understand what her condition is, and the only way to understand it is to actually take care of her for a few weeks, and be around her all the time. You can’t propose to take this on without doing that. It would be much more expensive to bring her out and then be shocked and realize this is more than you can cope with. Better to try it out first if you are at all seriously contemplating it.  

This is a hellacious illness. It is heartbreaking and gut wrenching and unfair and rotten and everything miserable. There is nothing comparable to the impacts of dementia on a family - just nothing that is as challenging on every level and as soul destroying for everyone in a family. I do understand what you are going through and how very hard this is - and it is that much worse when your sister is so young.

I know this is awful, and you have my heartfelt sympathy.

Mary G.


Stages of Alzheimers

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted
description of the stages of Alzheimer's disease. Even today, nine years later, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982

Level 1

No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.

Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.

Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing. Objective evidence of memory deficit obtained only
with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.Deficits noticed in demanding employment situations.

Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events; (b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions; (d) decreased ability to travel, handle finances, etc.

Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations. Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawl from challenging situations occur.

Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall
their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost