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Alzheimer’s and Other Forms of Dementia Care

Just the basics

Alzheimer's-careAlzheimer’s / dementia care is about patience. The patience to repeat, repeat, and repeat. Repeat conversations, repeat instruction, repeat activities. It is about structure. Structure leads to and preserves familiarity, and familiarity leads to comfort.

Allwel’s experience in providing over 14 years of service to persons with traumatic brain injuries, working with many of the same challenges of memory loss and impulsive behaviors (this care is specialized to addresses the same part of the body) is a perfect fit for providing the patience-based, understanding care for your loved one with Alzheimer’s / dementia. Our staff use the same patient instructional approach to make sure that our participant’s with Alzheimer’s / dementia are attending to their personal needs, have established routines, and have a regular set of staff to ensure as much familiarity as possible.

Allwel’s team, incorporating case managers, nurses, and social workers provides a complete approach to caring for the physical needs, as well as the time sensitive and financial responsibilities that are associated with remaining at home. These needs include the shopping, the paying of bills, the taking of medications, the scheduling of and getting to important appointments, or simply getting out into the community for visiting and social activities.

Below is an introductory guide to caring for someone with Alzheimer’s / dementia, as well as some area resources for both participants and family caregivers. Remember – caring for individuals in general is about taking care of the person and taking care of the person providing the care. The more support you take advantage of, the better you will be able to help your loved one.

What to expect when caring for someone with Alzheimer’s / dementia

Alzheimer’s / dementia affects memory, thinking, language, judgment, and behavior. Later on, it also leads to declining physical health. Alzheimer’s and dementia are often termed together, as Alzheimer’s is the most common type of dementia. Although there are many forms of dementia which, in reality, is just a general term for all the different symptoms of memory loss, declining motor skills, changes in behaviors, and more, the approach to care is generally the same.

Last, we believe in having a real conversation about what to expect, so please excuse our frankness.

  • Always keep in mind that no two days will be the same. Mood and energy level have a lot do with how the day will progress. Things that happened yesterday may not happen today, and things that did not happen yesterday may, indeed, happen today.
  • Caring for someone with Alzheimer’s / dementia is embarking on a journey, and as with any journey, the more preparations you make the less challenging it will be.
  • Earlier is better when setting up the people that will become responsible for all financial and health related decisions. For some, the journey is longer than for others, but each travels the same road and to the same destination. This means considering who will be the Health Care Proxy or Power of Attorney (will make health related decisions on behalf of your loved one), and who will be the Guardian/Conservator (will make the financial and care decisions). We always recommend speaking with an Elder Law attorney as early as possible to make sure that everything is in place should the unexpected occur. There is more than can be generally imagined—even by family who are professionals and do similar work in their day to day lives—when dealing with a person’s finances, a home, or how the transferring of money amongst family can impact the ability to provide care at its later stages. As difficult as this conversation can be, it is one that will likely have to be had, so have it earlier rather than later.
  • Get the person’s wishes down on paper now. Depending on how far along a person’s diagnosis is, it is important for the family to know how that person feels about the important items that apply to their care, their things, their end of life wishes.
  • Download our guide to homecare and start parsing out who will be responsible for the items described. Remember that this is as complete an overview as possible with the understanding that each plan for care will have some special items specific to that person. However, the basics always have to be attended to, and having a frank conversation amongst the people who will share in the care giving, who and what each will do and how often, as well as what you may need from a professional caregiving agency to supplement is of utmost importance. Eventually, there will be a need for around the clock care. You will need to answer how this will be achieved.
  • Establish a caregiver support system. Things come up in our daily lives, but the responsibility for making sure that the medications are taken on time, correctly, that there is food, and that the person is safe will not change. Make sure that communication between caregivers is good, open, and well planned.
  • Make a back-up plan right away. Who will be available for unexpected situations, and whom will they call? Which doctor and which hospital to go to? Who is the backup to the backup?

Routine as familiarity and comfort

Many of the triggers that bring out behavioral outbursts and negative emotions from the person being cared for can be prevented by establishing and keeping to a consistent routine. Same wake-up time, same time for breakfast, keeping things in the house in the same places, same times for and types of activities. This is very important. Also, having your loved one do as much for themselves as possible is equally important. Just because a person cannot do one activity does not mean they cannot do another. Experiment and try again often. Again, what can be done one day may not be able to another, but the reverse can also be true. Just keep in mind what will be safe and what will not. Incorporate as much visitors and social interaction as possible, but not so much as to overwhelm.

Communication with the person being cared For

It goes without saying that patience is the essence of all communication as your loved ones physical and mental abilities decline. The further along, the more closed ended communication you will need to do, such as limiting to yes or no questions. Limit ideas to one at a time. Remember that the speed at which information is processed declines, and there will be a point where even the simplest tasks will have to be broken down into each component.

Feeling frustrated will be normal. Losing patience will happen. Take a break. Recharge. Ask for help from your backup.

This is a journey so pace yourself. Don’t be embarrassed or feel less involved by asking for support when and where you need it. Remember, the dignity and love you are preserving for the person you are caring for, makes all the effort and challenge worthwhile. If you’re having difficulty providing the care your loved one needs, Allwel is here to help.

How can we help?

Feel good knowing we’re there when you can’t be there.

Local and Internet resources

Below is a short list of resources that provide information and news specific to family caregivers. Try each of them and find what you like. By no means is this exhaustive, and is here just to get you started.

Caregiver Action Network

Caregiver.com (local WNY and NYC resources and support groups by search tab)

Elder Care Online

Family Care Giver Alliance

Western New York

Visit the WNY Chapter of the Alzheimer’s Association at their website, or call their 24/7 helpline at 1-800-272-3900. – Find more information about the caregiving for Alzheimer’s / dementia, as well as what supports groups may be available in your county.

Alzheimer’s-Proofing Your Home is provided by the Erie County Caregiver Resource Center at 858-2177.

Memory Cafés are also provide by Erie County Senior Services and are locations to share activity and conversation for both the caregivers and the cared for. Although anyone can simply go, RSVP’s are encouraged. They can be reached at 716-858-2177 or by email at caregiver@erie.gov

Buffalo Hearing and Speech Center – BHSC provides a Brain Fitness program that addresses individuals with Traumatic Brain Injury, Stroke, or early onset memory difficulties.  They can be reached at 716-885-8318 or by email at askbhsc.org.  More information is also available at their website.

Alleghany County: Alleghany County Office for the Aging in Belmont, NY. Call 585-268-9390

Cattaraugus County: Cattaraugus County Department of the Aging in Olean. Call 716-373-8032

Chautauqua County: Donna Vanstrom/Family Services. Call 716-753-4471

Erie County: Department of Senior Services. Call 716-858-8526

Genesee County: Genesee County Office for the Aging, Batavia, NY. Call 585-343-1611

Niagara County: Niagara County Office of the Aging, Lockport, NY. Call 716-438-4020

Orleans County: Orleans County Office for the Aging, Albion, NY. Call 585-589-3192

Photo Credit: Dirk Schumacher

Greater New York City Area

Visit the New York City Chapter of the Alzheimer’s Association at their website, or call their 24/7 helpline at 1-800-272-3900 – Find more information about the caregiving for Alzheimer’s / dementia, as well as what supports groups may be available in NYC and surrounding boroughs.

Brooklyn: Center Light Health System offers support group for caregivers in Brooklyn. For more information call 718-362-1444 or email info@adultdayhealthcare.org

Bronx: Caregiver Support Center, Montefiore Medical Center, Bronx. Call 718-920-6654

Nassau: Caregiver Support Group: Call 718-470-8447

Nassau (Westbury): Caregiver Support Group: Call 516-605-0434

Nassau (Glen Cove): Glen Cove Senior Center: Call 516-759-9610

Queens (Bayside): Caregiver Support Group: Call 718-631-1886

Queens (Flushing): Caregiver Support Group: Call 718-358-3541

Staten Island: Alzheimer’s Foundation of Staten Island, Rosebank. Call 718-667-7110