Appropriate Living/Care Solutions for people with early onset dementia

acb583

My dad is 65 and is in amazing physical health, with pretty severe cognitive decline which has presented a dichotomy that is hard to address in traditional care situations. All of his children are working full time jobs with children of our own and his physical stamina actually creates more safety issues as he sometimes walks 5-10 miles away from home. We are looking for a more continuous care situation that would provide more safety measures but when we visit assisted living facilities and memory care facilities, we fear that his physical health will make it hard for him to relate and willingly participate in activities that aren’t more physical? 

Has anyone solved for this?

Cynbar

Based on your description, it sounds like he will need memory care for the safety of a locked unit and more supervision from staff. It's true that it is harder to find an appropriate one for a physically active, early onset person with dementia. You will need to visit several and discuss your dad's situation with them. Ask about their experience with early onset residents, what they have in place to accommodate their abilities as well as disabilities. Listen to their responses and see how knowledgeable and engaged they sound. Tour the units and observe how happy and well-kept the residents look, how the staff interacts with them. Check out the activity schedule. Ask what ongoing training the staff gets. In general, you should quickly get a feel for which facilities are better suited for your dad. And if the first one doesn't work out, you can always make a move.

MN Chickadee

My mother was in her early 70s when we moved her but she looked about 60 and was in excellent physical health. Her MC has had a few much younger people over the 2 years she has been there, like in their 50s, with EO. It seemed to work out in the end after people adjusted. 

A couple random thoughts:

Talk to your local chapter of the Alzheimers Association and also any local in person support groups they run. The social worker at the Alz Assoc and the caregiver groups may have a beat on what places are better suited for a younger person.

Keep in mind some people with EO decline  quickly. Just because he is excellent health now doesn't mean he will be in 6-12 months, and you are likely placing for the long haul. 

Adjustment, no matter their age or stage, takes time and patience. A good facility with well trained staff will help this happen.

If there is not a younger person or a male he can befriend and relate to now, there is always turnover in MC and there may be tomorrow. 

AL and MC are vague umbrella terms and services vary by location. Some AL is literally just housekeeping once a week and once a day wellness check. Others are higher acuity and offer far more services and care levels for dementia. Same with MC. Some are not locked units, some are nearly skilled nursing home level care. So if I were in your shoes, I can think of 2 places in my area I would start considering. They have numerous wings of care, from totally independent living to high acuity/medical memory care and skilled nursing.  In the regular AL they will take some extra steps to keep people there if they are reasonably safe (disable the kitchen appliances, use a wander guard so the nursing station gets notified if the person leaves etc, things for early stages.) If your father was in a place like this it might feel like a bit more freedom to him for the transition and then you could move him to memory care when the time comes, and that could be anywhere from a month to a year.  These kinds of places often have a fitness center and fenced in court yards and amenities for him to put that energy to work. 

Some people have had luck with a small group home setting for EO PWD. This would depend on your local options. 

If you decide he isn't quite ready for a facility, you might get creative with some at home options. Adult daycare can be very rewarding even for younger people. My mother thought she worked there, and in the beginning when she was still able bodied she helped out almost like a volunteer. She would help clean up, passed out food, helped others with their activities. A good day program will also find what makes their clients tick and find things they enjoy and also get him exercise. My mother went 5 days a week which left far fewer hours for family to either cover ourselves or hire in home help. This kind of arrangement might not be sustainable for months and months but might get you along until either you determine he MUST go to a facility or  until the room is ready if there is a wait list at the one you choose. Good luck and let us know how it goes! 

harshedbuzz

This is a difficult situation.

EO or not, care needs to be appropriate to what the PWD requires at his worst and not his current relative "strengths". The "walking 5-10 miles" is considered wandering; it could result in disaster. He could be "found" by an unscrupulous individual who scams him, he could wander into the wrong house and be mistaken as an intruder, he could keep going and be hurt or missing so long he's not found in time.

The reality is that some of the best MCF, offer families the option for their LO in "age in place" which is a nice way of sating "die here" which means you will be faced with the range of dementia progression from those who are placed in earlier stages because there is no family available to provide care to those who are placed much later in the disease process when sleep disturbances and incontinence enter the picture. 

Many MCFs will try to pair residents up with those who are closer to their ability to function for meals and activities but the population in these places can be fluid with residents coming, going and progressing at very different rates. 

If your dad needs MC in order to be safe, you might look into hiring a private aide as a visitor to take him for walks outside the facility and offer him companionship. 

HB

French

I have the same issue for my partner who is 52. And as HB suggests I am thinking to combine MC + an hired aid once per week to go out hiking + continuing the adult daycare he really likes and so that he goes out and doesn’t  feel in a jail.

I face 2 issues : 

- If MC is not too expensive here, with the + +  it becomes quite expensive 

- for the moment’ there is no place in the MC I have chosen and we have to wait about 4 to 9 months, probably 9. 

I still don’t know how I will manage a world without pandemic in September if we have to go back to the office and to travel.

aod326

Yes, my DH's situation was very similar. He was a week away from his 60th birthday when I placed him, last August, and he was extremely fit. He had been a long-distance runner for many years and was still running (with me following) up until a couple of weeks of going into MC. I researched many facilities, and chose an MC connected to an AL partly because it had a good gym. I found it so hard that when I looked at places - one in person before COVID, then Zooms - most of the residents were very much older. The activities were not things I could see him partaking of.

Turned out, though, he talked to everyone, and was a big hit with all the white-haired ladies! And he loved making the bead bracelets. The unit director was great and, knowing he'd been an attorney, asked my husband to "help her" in the office. 

There is another thing to consider with young healthy men though. Not all facilities will take him, because of concerns as to how much harder it could be to "control" him if he has or develops any behavioral issues. In fact I had to move him after only a few weeks, because when my husband would get frustrated, they didn't know how to handle him.

The MC I moved him to was much more "no-frills", no gym, and even shared bathrooms, which there's no way I would have considered for him previously. Things there were much better - and again, he made friends. 

So, you may find it works much better than you are thinking it will.

Best of luck - this is a very tough time.