A Complicated Transition – When Dementia Starts Before the Planning Catches Up

Dementia is not an on-off switch.  It may progress quickly or it may progress slowly, but it is progressive. For most, family members see the changes and begin making appropriate plans. Advance directives and estate plans are put in place early. A move begins toward assisted living, with an eye toward nursing care.
But for some, this is not how it goes. Those without family or support, may begin to progress through dementia without anybody noticing – including themselves. For these people, an orderly transition may not be possible.   Many continue living in a house that they can’t fully maintain until some crisis forces a change. Commonly the crisis is financial or medical. These are the cases where professionals in aging can really make a difference. The professionals who are needed can vary with each case.  Even more important, though, is assembling the right team for the individual.  This means finding people with the right personality to help the senior make a smooth transition. The following are a few tips that may help in that process.

The Client’s Wishes are the Starting Point

A client with dementia may not be able to manage their own affairs, but that doesn’t mean they don’t get to be involved in the decisions.  Any plan that fails to take into account who they want to work with and where they want to live, is not likely to succeed. In addition to coping with the “nuts and bolts” of the move, you will need to spend time preparing the senior for the emotional difficulty of making the move.

You Need a Point Person

A client with dementia may know what they want, but actually accomplishing it may be impossible.  Somebody must be in charge of the process. If the client has signed a power of attorney for property, (or still has the capacity to sign one) – that can be the starting point. If not, guardianship may be the next step. Choosing the right person to act in this role can be difficult. If there is a trustworthy friend or relative willing to act – that is often the best option. If not, there are private agencies who can get involved. Many of them provide excellent service, but they can carry significant costs. Moreover it can take the client a while to develop trust in a stranger. For children of parents going through this transition, it may still be helpful to have outside help, because of the emotional challenges of moving out of a family home.

Somebody Needs to Watch the Wallet

As the boomer’s are starting to age, there are an increasing number of companies providing services to the elderly. When you come across a client that has vast needs, it is easy to start lining them up with all of the available services. The more money they have, the easier it is. The point person needs to be careful to ensure that the services are being done in the most efficient manner. Elder law attorneys, geriatric care managers, accountants, investment professionals, organizers, caregivers and others can  all help a client save money through their advice. At the same time, these same people can cost a lot of money if they are being utilized to do work that could be done more efficiently by others. For example, you want your elder law attorney to make recommendations about insurance, real estate and estate planning – but you don’t want to pay them to sort papers. A good professional will advise you on where you can cut costs by using others, or doing it yourself.  You should also consider how many of these services could be provided by a government or not-for-profit agency that might perform the service free, or at a reduced cost.

You Need a Team

The issues facing this type of client are very broad. In a typical case, needs will include tax assistance, sale of their home, estate planning, care management, medical treatment, mental health advice and bill payment assistance, just to name a few. No one person is qualified to provide all of these services.  Making the transition to a nursing home is not like packing for college. Good professionals in the field of aging, will be able to help you to find a team that you can trust. Getting a realtor with a good sales record is important, but it is more important that they have experience working with elderly clients.  Some realtors specialize in estate sales and senior transitions.  Similar examples can be found for almost any type of provider. If you have a good team, the process will be much easier.

Don’t Forget the Client

The process begins and ends with the client.  A client with dementia is a moving target.  What works for them one year may not work in the next.   At the outset, working with those who have waited too long to make plans is like a triage. You are required to tackle the big issues first.  As things settle down, though, it is important to go back and monitor the client’s quality of life. Once the house is sold, taxes are paid and investments are managed – perhaps there is money for extra art lessons or some short day trips. For those who work in aging, and those who have accidentally landed in the role of helping a friend – don’t despair. The needs of seniors struggling through these transitions can be great, but it can also be very gratifying to help them.

The author would like to thank Alixandra Burns for her work editing this article.  Also thanks to Michael Fraley for the use of the photo which can also be seen at  http://www.flickr.com/photos/28994435@N05/3053064181/

One Comment

  • Laurel Spahn

    I appreciate your approach to dealing with dementia issues. It’s telling that you start and end your piece with what should be the main focus for families, service and care providers, and courts: the person with dementia and his or her wishes. Thanks for your insight and sound advice.

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